# Imuran and me, a personal diary



## Kev (Jun 14, 2007)

OK, talk about deja vue all over again. I'm starting a new diary, recounting any or all effects of my first experiences with Imuran, aka Azathioprine. I got through my first day A-OK.  I'm on a very low dose to start..  50 mg per day. I ramp up on a slow basis depending on how my blood work (performed weekly to start) goes.  So far, so good.  In that the drug didn't immediately make me want to vomit.  Apparently that's a bad sign...  but I haven't had any signs (good or bad) to report.  However, that may change when I hit my maximum dose of 250 mg a day... which could take weeks, even months to reach, again depending on the blood work.  And, since I have a history of pancreatitis, and one of Imurans side effects is pancreatitis, then how long I stay on this med is up in the air... 

Anyway, the only issue I had with this drug was the totally blown out of 'real' proportion the fear of how much it would cost for me to acquire this drug. I had heard exxagerated tales of immuno-suppressor costs being totally outrageous. I knew someone who passed away from Leukemia, and the cost of their immuno suppression treatments were completely beyond belief. In my case, using the auspices of the Metro Dispensary, I paid $12.47 Canadian for 30 50 mg pills...  Of course, this was for the generic version Azathioprine. 

If anyone else on this site has stories (good, bad or otherwise) to share on their experiences with Imuran, please feel free to add them here.  Think if a person new to all of this WANTED to find out about Imuran/Azathioprine, it would be nice to have a common repository of stories on the pros and cons in one place.  So, don't feel like you are hijacking this post if you have stories to add. OK?  And, if you are someone looking for info on these drugs, PLEASE remember that the opnions expressed here are just that, and not MEDICAL advice of any kind.  We aren't doctors or medical professionals, just people who have personal experience with one or more forms of IBD, and are willing to share those.  Everyone is different, these diseases affect everyone in a different way, and one persons experience with these drugs may be totally different than yours.  If you read anything expressed here that causes you not to take a drug prescribed by your doctor, you need to discuss that with your doctor FIRST.  I'm not talking legal speak here, just common sense, OK?


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## Kev (Jun 15, 2007)

Imuran and me..  OK, two days down, just taken dose # 3. Nothing to report. It doesn't surprise me.  GI told me not to expect immediate results from this drug.
At least it looks like I wont' be spending this birthday in an ER or the hospital..
YIPPEEE!! Anyway, at this stage, still keeping an eye out for any side effects:

According to the literature and my long talks with my GI before starting on it, side effects of Imuran/azathioprine are as follows: Long term use increases the risk of skin cancer, lymphoma, and blood disorders such as low white cell counts and platelets. Watch for unusual changes in the skin, moles changing size/color, growths/lumps, swollen glands, unexplained weight loss, itching or signs of infection (fever, persistent sore throat, etc..) easy brusing/bleeding,
or unusual tiredness. Other effects to watch for: nausea, vomiting, diarrhea, or loss of appetite. Serious side effects include the above more pronounced, 
and also fever, shaking chills, rash, itching, swelling, severe dizziness, trouble breathing, cough, new or worsening joint/muscle aches, dark urine, weakness or muscle loss, vision changes, hair loss, cold/numbness in the fingers, mouth sores, difficult/painful swallowing, greasy stools. More serious side effects are
yellowing eyes/skin, swelling/extra fluid around the abdomen, vomit containing blood or looks like coffee grounds, or black stools.  That ends the list of side effects that came with this drug, but it goes on to add.. "If you notice other effects not listed above, contact your doctor or pharmacist."  Other effects?

Shhheeeeeesssh!  The literature I got from the hospital was not so scary. It gave me rough figures (risk percentages)..  They typically ranged from 1% to 2.3%.  That helped put it all in perspective.  Like, if 200 people took the drug then less than 5 might develop skin rash, fever, muscle aches & joint pains.
so, that info was very comforting.  Far less comforting was the info on how often (or not) this treatment works.. apparently it only has a 40 - 60 percent chance of success.  so, I may take this med for 2 months before discovering I am in the other range..  60 - 40 percent where it doesn't work. Deja vue???

Why not just call it 50/50?  Talk about a coin toss  Heads I win, tales I lose..

Ah, the fun of having IBD


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## Mazen (Jun 15, 2007)

Hi Kev. I'll tell my story with Imuran.

After having frequent fevers for a while, I was admitted to the hospital and put on 40 mg prednisone, 100 mg Imuran and continued taking 3g Pentasa.

After 3 days I went home, weaned the prednisone in 3 months, and stayed on Imuran and Pentasa. 3 months after that, I had a bowel obstruction (terrible pain and cramps, bloating and vomiting). I was admitted to hospital again, put on 60 mg prednisone, and my dose of Imuran up to 150 mg. 

After that I again weaned my prednisone for 3 months, and stayed on 150 mg Imuran and 3g Pentatsa. Blood work was normal. The next 6 months were heaven. I was in total remission, and thought the Imuran was working for me.

But suddenly, I started feeling very nauseous, and had vomiting attacks every couple of days. I had a blood tests, and it showed high Bilirubin (1.9). The doctor told me it was the Imuran and that it was causing liver toxicity. He lowered the dose to 50 mg. After a few days I felt better. 

Now after about 2.5 years of taking Imuran, i'm still on 50 mg daily and 3g Pentasa. I'm in 80-90% remission (still get small flares every once in a while that last for a week or so). My blood work is normal, except that my Bilirubin is slightly above normal, 1.4 (the normal range is 0-1.2). The doctor says it's OK as long as it's below 1.5 and all other liver tests are normal. 

To tell you the truth, I'm still afraid that Imuran may cause me liver damage in the long run, but at the same time I'm afraid to stop and risk flaring again.... I'll have to keep an eye on things and pray for God that things get better. Good Luck for you...


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## Kev (Jun 15, 2007)

Hey Mazen, thanks for the input...  Yeah, when my GI said I was probably going to be on Imuran for 5 years, then the outlook for the long term side effects does make one wonder what the future holds..  but, when I stop and consider what my present would be like if I didn't have this drug to try, or I wasn't able to take it...  And when I factor in the other health risk factors I live with on a daily basis..  like, I smoke, don't excercise enuff, and my pre-illness diet wasn't as healthy as it could have been, then I have to stop kidding myself..  There are risks in life, and I have to accept those associated with imuran.  Case closed.  What other legitimate choices do we really have?


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## Nancy Lee (Jun 15, 2007)

I know I am going to find this Imuran diary very interesting.
(I did your Prednisone one as well Kev)
As I have stated before, my doctor wants to switch me to Imuran.
He has given me the summer to think it over, and check out studies, the internet etc.

I'm so pleased to see you doing another diary on Imuran!  
And best of luck with it!

Nancy~


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## D Bergy (Jun 15, 2007)

I concur with Nancy Lee.

The last diary was very informative.  I am particularly interested in Imuran since it is a real possibility for my own future.  But, like most good Americans, I will exhaust all other options before I do the right thing.  (I heard that a famous Canadian said that once).  Must not have been too famous as I cannot remember who said it.

D Bergy


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## Kev (Jun 16, 2007)

Well, thanks NL & Bergy.  I'm glad people found it helpful. Writing it was helpful to me in a cathartic sort of way.  I had been filled with dread over the possible side effects of pred..  In reality, my experience was far more beneficial than bad
However, I don't know how typical it was.   A famous Canadian, eh? I wonder who that could have been.  Anyway, back to Imuran.  So far, no eurekas, but I wasn't expecting any, especially at such a low dose.  As for side effects, none of those to report either,, again probably due to the low dose. I have an issue about 'spitting in the wind'  (sounds like I'm describing IBD gas, don't it?) but I am a bit superstitious, and I don't want to jinx myself by stating that I don't have any side effects yet... but, as of today, it's another so far, so good!


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## katiesue1506 (Jun 16, 2007)

Hey Kev! Nice to see another diary... I was on Imuran for about 7 or 8 months and I was finally able to come off of it when I started my Remicade infusions. But anyhow... the side effects that I got from the Imuran was the muscle pains, hair loss(which I'm still battling- and it didn't come til about 3 months after use), and the pallor.     

All in all it wasn't too bad of a medicine but I think it caused sexual problems because now that I'm off of it I don't have those problems anymore. 

I hope the Imuran works for you... it started to for me, but then Crohn's took over again and I had to go to Remicade, which has put me in remission... so if this doesn't work for you... you still have other options... GOOD LUCK!


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## Kev (Jun 17, 2007)

Thanks Katiesue..  If the Imuran doesn't work, I still have other options left: methrotrexate (sp?), remicade, surgery...  

As for the side effects you had, I hadn't even heard of them (thanx, I guess) ;-)

Pallor doesn't bother me...  I have a naturally fair complection, born a blonde..
One of the drugs I currently take makes my face red...  so a little pallor may actually help.  As for hair loss, I have always had way too much hair. just one more hair and I would be swinging from my family tree... Seriously, my 'very' thick head of hair is more a nuisance than a blessing...  it's like wearing a big old wool cap year round.. it isn't easily manageable, and most barbers, etc., have a hard time cutting/styling it.  At one time I even shaved it all off, and would have continued with that look, except for the fact it took a minimum of 1/2 hour each night, plus 1 - 2 razors.  And as for sexual side effects, well, if it means a lowering of interest, I could live with that..  it might counteract my issue with just the opposite effect that flares seem to cause me right now. At my age, things are naturally supposed to slow down, and I prefer quality over quantity anyday.  If it refers to more the 'mood' side of things, Hey, I'm male and on steroids... so, moods are something I've grown accustomed to by now

OK, just in case you get the feeling I'm dismissing your wonderful input, that's not the case at all.  I'm just trying to put a humourous light on the probable side effects, and to put them in perspective in case they may frighten off a person who is contemplating Imuran.  Like, accentuating the positive, right?

Thanks again...

and glad to hear that you had a overall good experience with imuran, and that you are doing so good under the remicade (which I may be facing someday)..

can I ask what remicade costs you?


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## soupdragon69 (Jun 17, 2007)

Hi Kev,

This thread is interesting like your "pred thread" as the others have said already.

I end up on pred fairly often - up to 60mg a day - due to my asthma so understand where you are coming from on the moods and being hyper..

From an imuran perspective I have been on it since Feb/March this year. Have worked up to 200mg daily and my GI wants me to end up on 250mg. Had probs with nausea in the early weeks and swapped round to taking it at night which helped alot. No other probs with it since except last week my bilirubin has climbed just outside the upper limit of normal and GP isnt happy. But we will see what tomorrows tests brings on that front eh?

Because I was deteriorating despite the imuran I started Remicade 3.5 weeks ago. Am still extremely drained and off work now 6.5 weeks but abdo pain is easing and am managing light diet now in small amounts on top of my elemental drinks. So progress on the positive side it seems and keeping my fingers crossed it continues.

Will look forward to reading your posts Kev. Hope all goes well


Jan


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## Kev (Jun 17, 2007)

Thanks Jan..  rite now I'm at the baby step level.. and still no side effects at all

However, my current regimen is to take my pred, imuran and salofalk on a full stomach at the start of the day... 9 am at the latest.  I then take 2 more doses of salofalkm, 1 mid day, 2nd at bedtime,  this seems to work so far.  However, if I run into problems, I'll try your method.


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## Mazen (Jun 18, 2007)

Hi Jan. It seems you have the same Bilirubin problem as me; just be very careful and test your blood often. Also if you start vomiting go immediately to the doctor, as you may need to reduce the dose of Imuran... Waht level of the Bilirubin does your doctor think it's OK?


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## soupdragon69 (Jun 18, 2007)

Hi Mazen,

Here in the UK we have a different range of numbers. The top end of the scale is 17 and mine last week was 18 so just outside, so they want me within the normal range and just phoned me last week so I was aware it was creeping upwards and to keep an eye on things. I go for my weekly bloods this morning again and get the results tomorrow midday. Will keep you posted.

Hope you are well, its nice to be able to bounce things off folk here isnt it.

Jan


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## katiesue1506 (Jun 18, 2007)

Hey Kev, 

My Remicade costs $4,800.00 (USD) per infusion... and insurance has been covering about 90% of it... which is good because at the hospital I go to, they'd shove me out the door if I didn't have insurance. It's a pretty steep cost, but put me in remission... so I guess you pick the poison. However I will say that since the Remicade costs so much, my doc is putting me on Humira in July. I think I have a $40 copay on a 3 month supply... not sure though.


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## Kev (Jun 18, 2007)

Imuran and me...  WOW, it's great to see folks popping in with their own stories.
Thanks again to all.  Figure any newbie who is facing imuran will find good stuff in these posts.  As for me, I have a confession to make.  I did something on my birthday that I shouldn't have.  I broke my regimen.  Went off my diet, and even drank.  Had a steak, and 2 glasses of beer. Why? Well, it was my birthday, and the next day was Father's Day, and I went out and partied till late in the nite. I figured.. what the hey, I'm going downhill anyway, (a lame excuse), and the past 3 years sticking to my diet, etc., didnt' seem to work.
OK, enuff excuses.  I did it, figured that I would suffer for it, and that would be that.  Except, with a pervesity (sp?) that I've come to associate with this disease, I ain't suffering.  Actually, here we are 36+ hours later, and my BM's today and yesterday are the best they've been in the past 4 months, and my other symptoms are better too.  Go figure...  I can't figure it out at all. Why am I so improved?  4 - 5 days of lowest dose imuran? I really don't think so.. according to all I've been told/read, it should take months to kick in... Maybe it's the fun I had.. they say laughter is the best medicine. maybe it was that this birthday was the best I can recall, certainly the best in the past 4 years.

I dunno.  Hate to be caught out being 'naughty'.  Thought about keeping my mouth shut.  As a parent, I tried to not be one of those who raised their kids via the 'don't do as I do, do as I say' scenario.  Same applies here. But, since the whole idea is to share our true experiences here with this illness, and the truth about my current status is that, despite breaking my dietary rules, I am apparently doing much better... I confess.  I wouldn't recommend to anyone that they follow in my foolish footsteps, and I am now back on my diet, etc.,
and also hoping that the trend of the past two days in not some cruel fluke.


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## Kev (Jun 18, 2007)

Hey Katiesue...  So, figuring you for 10%, about $480 per..  with insurance. I've heard that it's about $3000 per up here (that's mostly speculation or hearsay)..
Anyway, I am not facing remicade infusion yet, but if I do, then I don't know how that would happen...  I mean, I don't have any insurance..  so, whether its 3000 or 4800, it wouldn't make much difference.  like, I could rob a bank, but in my condition, dont' think the police dogs would have trouble tracking me down.

;-)


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## Kev (Jun 19, 2007)

Imuran and me..  Here's today's status..  After my little walk on the wide side on Saturday, I've been a good boy the past two days... Yet, today, my symptoms are back to where they were before Saturday.  not a major setback (as of yet) but a puzzling one..  I mean, it's been well in excess of 48 hrs. (actually closer to 60) since I ate my steak and drank my 2 beers..  so I would have expected any adverse reaction to have been and gone before now...  does that sound logical?  There I go again, trying to predict the future


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## D Bergy (Jun 19, 2007)

I guess you are just going to have the stick with the "Steak and Beer" protocol.
That would become quite a popular treatment, I suspect. 

I have not found any rhyme or reason for what affects me either.  I will get loose stool one day and the next it is fine.  No real change in diet.
Milk is the only one I can count on for the big D.

D Bergy


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## TammySue62 (Jun 19, 2007)

Hi Kev
Dr wanted me to try Humria but seeing that
I have been taking Remicade for years,he advised
me against it. His story was that I had to stop taking
Remicade completely for 3 months then start on Humria.
My system would not handle being off Remicade for 3 months
definitely would be hospital material for me.If I did decide to take
Humria then I could not go back on Remicade. So why mess
with a good thing.The Remicade is good for me for about 4-6
weeks then I start to go downhill for the last 2 weeks. I am used
to this procedure know.
The cost on the Remicade is 6000.00 for me.It goes buy your
weight and 5 or 10 mg viols. I usually take 6 viols because I
just weigh in at 121 if I were 120 then I would have to take 5 viols,
@ 10 mg. So you can figure out the math.Not very good at that.
I just had my infusion yesterday and for some reason I had a slight
reaction. I just barely made it home. Couldnt drive,my head was very
light headed couldnt concentrate on anything almost like my brain
was in a fog. Anyhow I made it home and stayed on the couch
most of the day and night.
If you decide that Remicade is right for you our (lovely) LOL government
has a plan to help pay for the high costs of drugs.
There is Ontario Works(for people who work but cant afford the high costs
of drugs)ODSP Ontario Disability Support Program (people who dont work
because of a disability (like Crohn's People) and then there is Trillium where
you pay so much a year. Not to familiar with that one.

Goodluck on your journey. Your posts always puts a smile on my face
If you have any questions feel free to ask me  
Good Day


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## Kev (Jun 19, 2007)

OK, another update..  Here it is early afternoon.. took my usual meds earlier in the AM, after breakfast..  nothing unusual or different about today. right? wrong
Rite now have severre heartburn... reallllllly bad!!!  that isn't typical. Go figure


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## Kev (Jun 20, 2007)

imuran and me..  OK, 1 week of imuran down... 259 (+/-) to go. Yesterday I went to the closest hospital for my 1st bloodwork since starting imuran. that was a complete waste of time.. I arrived at 3:30 in the afternoon, they closed at 3:00..  Went back this AM, bad choice.. long lineups.  took me 2 hrs to get it done.. not looking forward to repeating that every week ad nauseum.. oh, well!
Tuesday, altho no side effects apparent from imuran, my BM's were way worse. And, I did have a brief bout of incredibly bad heartburn. not typical, and my diet since my brief 'breakout' Saturday has been STRICTLY LEGIT. so, I can't explain my situation.. like, I can't say.. OK, I did this, and that's why I got that..  Late evening Tuesday, after mowwing the lawn, I scrambled for a bite to eat.. I should know better, but I opted to BBQ an extra, extra lean beef burger..  considering my condition, that's a pretty risky, stupid move. so, today, what's the verdict?  My BM's are once again the best I've seen in many a month..  no issues, no heartburn, no extra pain, cramping, gas, etc..

Is this a fluke? Probably!!!  Would I recommend my behaviour to anyone else?
Definitely not... Is this just IBD being as perverse as I've come to expect it?
Most likely.  But, you know what?  If my condition deteriorates again over the next few days as I resume my bland, legit, low fat, low fibre, etc, etc, diet.. I am going to try another burger, or steak, and see what happens? Perhaps the GI who told me his 'un-official' take on the diet situation is that it really didnt' help/hurt regardless of what you ate (of course, he doesn't have IBD himself)
may have been onto something.. or it may be that occasional red meat is of itself sometimes needed by the body.  or maybe imuran has a good side effect


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## DarrylP_Ajax (Jun 25, 2007)

I have been on Imuran for quite some time now at 250mg/day....i would have to say i spend about 80-85% of the time in complete remission (no crohns symptoms what soever) and about 15-20% in mini-flares (gas, bloating, very very very rare D, and only slight BM increase from once a day to about 3 times a day max on a bad day) so i would have to say Imuran has been a saviour for me. As far as blood work goes, pre-imuran and post-imuran blood work looks almost identical, minus a very slight drop in WB Cell levels. (the drop just BARELY brings me into the normal range, without Imuran my WB count was around 13-14) so it has has no effect on my bloodwork whatsover but seems to be keeping the crohns in check. I spend 6 nights/week at the gym as well, so i think that helps deter the negative effects....


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## DarrylP_Ajax (Jun 25, 2007)

On that note i go for a scope and bloodwork tomorrow morning! Wooo!


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## Kev (Jun 25, 2007)

Imuran and me..  Ok, now at 100 mg imuran, 30 mg pred, 4.5 g salofalk daily. My weekend was great..  went to work today, and ended up with horrific heartburn.
(OK, so healthy people get heartburn too)..  Other than that, no bad news. I go to the hospital sometime this week for my next bloodwork, I'll try for sometime tomorrow or Wednesday so the reports should be ready for my GI visit Friday.

Hey DarrylIP_Ajax  Let me guess...  To bulk up, you must be consuming mass qty's of protein.  Chicken, protein shakes, etc..  what about 'red' meat? Any?


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## DarrylP_Ajax (Jun 26, 2007)

Kev said:
			
		

> Hey DarrylIP_Ajax  Let me guess...  To bulk up, you must be consuming mass qty's of protein.  Chicken, protein shakes, etc..  what about 'red' meat? Any?


EEEEkkkk, i avoid red meat quite alot. Pork is a 100% no, dont eat one morsel of it at all, Beef i love, but since i cant handle large amounts of it like i used to i treat myself maybe once a week to a super lean burger, other then that, no beef either.

As for the chicken and protein shakes, yes, i eat alot of it, i wouldnt say "mass qty's" though, i eat a lot but not like a professional body builder would or anything. Tuna/Salmon are big on the list too, i try and eat a lot of unprocessed tuna for protein and fatty acids. Oh, eggs, i eat about 4-5 whole eggs a day as well.


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## Kev (Jun 26, 2007)

I used to be in power lifting... worked out at the same gym with guys who were into body building..  got used to them bulking up with hi protein, low fat diets in the 2 - 3 months leading up to competition..  Saw guys who consumed multiple chickens each and every day.. By the time the competition was over. most of them couldn't stand even saying the word chicken.  One of them, even though he is my age, still into it.  Doesn't enter the competitions, but still ramps up for the season.  Me? I gave up.. too hard to find clothes that would fit...  like, my chest was 16 inches larger than my waist, so to buy a suit was a real hassle...  and try to find a decent dress shirt with a 21 neck


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## Kev (Jun 26, 2007)

imuran and me.. Sort of got side tracked..  little loopy today.. working a case, literally did 13 hours work with only 3 hrs sleep.  Not as young as I used to be.

Anyway, seem to have had a mini flare.  Seems to be settling down now. I don't have a clue as to what caused it.  Will see my GI Friday, run it by her for input.


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## Kev (Jun 28, 2007)

Imuran and me..  OK, that mini flare settled down, then up again.  Too early in the day to tell whether the saga continues.. or is settling down for good (got my fingers crossed)..  Anyway, see my GI tomorrow.  Hope that goes well too. 
So, at the present, I'm at 30 mg of pred, 100 mg of imuran, & 4.5 g of 5-ASA


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## Kev (Jun 30, 2007)

Imuran and me..  OK, something is going on.  Not sure what.  Extreme pain in my legs... and in my back.  Leg pains are the worse..  actually start in the soles of my feet, run up the calve muscles, then up the thigh muscles.  Sort of feel like 'charley horse' cramps, only more intense and longer lasting. A new experience for me.  The back pain is indeterminate.. not sure if it's just my bad back, or if it is something else.  Anyway, wouldn't you know it, none of these were 'present' when I saw my GI yesterday.. No, it had to start late on friday before a long weekend.  Can't get to see a chiro about my back pain, or really do a lot of prep work for my son's arrival early tomorrow.. IF I'm able to get out of the house by this time tomorrow.. Hope things turn around soon


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## Kev (Jul 1, 2007)

Imuran and me.  OK. Whatever this is, it isn't usual. also running a high fever. I'm supposed to curtail my imuran in the event of something like this, and head to the ER and request the oncall GI.  Well, it's Canada Day, my sons are here, and i'm not going to follow doctors orders..  yeah< I'm a stubborn old fool. So I did the following.. I cut my imuran in 1/2.  Seemed to help. not sure if that's due to this being a side effect, or if the reduced dose helped my immune system to do a number on whatever is causing the fever, aches/pain.

anyway, my plan is to finish up some case notes for my boss, tuff out the rest of the day, and if no improvement, head to the ER tomorrow morning. so, if you don't hear from me, it's because I've been hospitalized again. go figure


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## Kev (Jul 2, 2007)

Imuran and me..  OK, so I tuffed it out, and ended up rushing to the ER @ 5:30 AM.  6 hrs later...  They did x-rays of my legs, knees, and spine. I had to twist & contort like an epileptic gymnast... all the time while in unbearable pain. Pain in my knees woke me.. felt like someone had kneecapped me.  Like, did you ever hit your funny bone? Except in this case, the pain just wouldn't go away, at all!
Eventually, they gave me something for the pain via IV.. that took care of pain in legs & knees....  but not the back.  apparently the toroidal(sp?) works only on inflammatory pain..  The fever has broken, but I have a funny rash all over me.. so that could be reaction to doubling my dosage of imuran. no one at the hospital could/would give a definitive opinion on that.. they say it may be the steroids, the imuran, or something completely different. they do 'know' from the x-rays that there is no sign of infection in the back, knees or legs. So I spent 6 hours at the hospital, got only IV pain meds for the pain, they wouldn't give me a prescription for anything to take at home, & no diagnosis. Their 'best' advice?  Get a thermometer, record my next fever (if it returns) & take tylenol xtra strength for the pain, come back if pain or fever return. LOL


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## Nancy Lee (Jul 2, 2007)

Ah Kev..
I'm so sorry....
Sounds like the old line, "Take two aspirin and call me in the morning"

Whatever this is I hope it goes away soon!
Thanks for keeping us posted..
and Happy Canada Day!


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## D Bergy (Jul 2, 2007)

I hope they are doing some liver stress tests while they are checking you out.  The rash is kind of worrisome.

Sorry you have to go though these roller coaster rides.  Seems like you get more than your fair share of them.

D Bergy


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## Kev (Jul 3, 2007)

Imuran and me.. update..  Just came from the chiro...  she found two points in my back.. one upper, one lower.  lower one is causing inflamation of the nerves leading to my legs..  She went to work on it, got immediate improvement. But its too far gone to be resolved in one visit.. Ice packs and more chiro visits are the order of business.  Anyway, it doesn't explain the rash... that could be from the imuran.  Too early to tell... But it looks like the extreme leg pain is definitely not. If the rash is from the imuran, then I don't see it as sufficient cause to stop using it...  but my GI may have a different take on it.  Anyway, all the info from yesterday's trip to the ER is wending it's way to my GI..  So, I'm just waiting to hear from her, and seeing my chiro in the interim.


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## Nancy Lee (Jul 3, 2007)

Sounds like a good plan of attack Kev!


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## Kev (Jul 4, 2007)

Imuran and me.  OK, it looks like this may be the end of my imuran story. My GI just called, and I'm taking a 2 week total imuran break.  Then, I may try 25 mg.
If the rash comes back, then no more imuran for me, and we're on to Plan 'C'???


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## Nancy Lee (Jul 4, 2007)

Sorry Kev.  In the back of my mind was a nagging suspicion it was the Imuran causing the rash.
Okay...what's plan "C"?  :confused2:


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## Kev (Jul 5, 2007)

Well, Nancy Lee.. that's a darn good question.  Problem is, I haven't the foggiest idea.  Taking imuran out of the equation leaves me with ever shortening list of options.  I won't speculate at this time.  Just wait & see what happens.


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## Heathcroft (Jul 6, 2007)

*Low white blood count*

Hi Kev and all here.  Reallly sorry to hear about your recent problems Kev, Just a thought though before I go further, My chiro says that  the Crohn's itself can trigger off inflammation of the joints in the lower back, hip and knees. I get these too but not as extreme as you described. So I wouldn't blame the drug just yet?

Anyway, here's my brief story of Imuran (known here in the UK as Azathioprine) and luckily state subsidised on our Health service. for £2.50 per prescription / month.

Anyway I came off predisilone after 6 months after my last hospital stay and had a test to ensure my liver could cope with azathioprine which is toxic to some people.

Apparently my liver was deemed to be OK, so was started on 50mg a day which made me feel sick for a week then I was OK so up it went to 100mg. At 150mg I still felt sick so  the GI guy dropped to 100mg which is a  theraputic dose for me as I am only 10 stone (Thats English for 65 kg or 140 pounds). Or put another way  I'm a skinny guy.

100mg seems to work OK except for some side effects, and yes Kev, I read all that stuff too, and was frightened to death but what are the options?

I feel tired as my white blood cell count has dropped away and hovers around 2.6  (3.00 is the bottom end of normal). I have to have weekly blood tests and stay out of crowds etc.

I have some skin problems too but nothing drastic - well to me they are - see my other posts! I find the sun burns me more, not that we are getting much here this summer. Actually the stuff seems to be working as intended  in other ways, as my guts are behaving and my CRP levels are minimal (That's inflammation markers).

Anyway if your white count goes below 2 you have to have an IV drip of some granulation stuff which encourages the bone marrow to produce more so if that happens I will be off the azathioprine pronto! 

Some days I yearn for prednisilone actually. At least it puts you in a good frame of mind even when you are physically low. I asked the GI guy if I could go back on it (at 10mg ) when my blood count went down at first but he said no so I  have to give it  a chance.  

My next result is due today so I'll check back tomorrow if you are interested in knowing how it goes!  As Kev said at first  this is not medical advice, just a personal observation. Hope it helps!


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## Kev (Jul 6, 2007)

Imuran and me.  OK, two days off the imuran, and my back and leg pains are lessening..  And, although it may be coincidental, the pain areas correspond to the location of the rash..  legs and back.  I'm still seeing my chiro, so the relief I am experiencing is greatly due to her efforts... but I have noticed a substantial reduction in my pain since stopping the imuran.  Looks like I am allergic to it..


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## Kev (Jul 9, 2007)

Imuran and me.  OK, six days since ceasing to take it, 10 days since the major signs of an allergic reaction.  Finally, the pain from it has passed. no remaining pain at all.  the rash is gradually fading...  looks like chicken pox..  back & legs..
I'll update this post after meeting with my GI and finding out what comes next.


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## soupdragon69 (Jul 9, 2007)

Hi Kev,

Have just caught up with your Imuran thread... Sounds like you have been through the mill with the side effects. Hope your GI sorts things out for you today. Thinking of you.

Jan


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## Mazen (Jul 10, 2007)

Hi Heathcroft. I read somewhere that Imuran increases the sensitivity to sun, and can increase skin cancer risk. So be careful with sun exposure; although some is needed for proper vitamin D in the bosy, and this is very important for Crohn's.


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## Kev (Jul 10, 2007)

Imuran and me..  Imuran (aka azathioprine - see tags) does increase the risk of skin cancer (amongst others - but the increased risk is fairly low) so anyone on it needs to take precautions.  There are other side effects & increased risks, but for me, the point is now moot.  I didn't suffer a side effect, apparently it was a full blown allergic reaction.  Looks like Imuran is off the books as far as treating my disease goes. I see my GI in 2 days, will examine my remaining options then.


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## Heathcroft (Jul 11, 2007)

Hey Kev- Just a thoght here but did you get a liver enzyme test BEFORE you started the imuran?  You are supposed to have this test before taking it to see if your liver can tolerate it.

I know it's bit late  for you if that was the case but it may be useful for other members who are about to embark on it.

I'm not sure if you did, but you are due to see your GI specialist  tomorrow so if you didnt' then you can (politely) ask him/her why not??


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## Maggie-Muffin (Jul 11, 2007)

Hi kevin been reading your diary.I'm also on imuran,100mg daily been on it off on on for about two years now.It really doesn't do much for me maybe lessen bathroom trips some.I haven't had any major side effects from it either,blood work is fine other than low levels of B12 and Potasuim which i had before I started taking imuran.now they are talking about Remicade and imuran.I have no idea how I will pay for that if I have too.My imuran is$89.00 plus change a month.Which hospital do you usally get admitted to? I have been at the QUE11 a couple times now,don't like the place at all. Of all like my closest hospital the best.Good luck


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## Sojourn (Jul 12, 2007)

Sorry to hear of your allergic reaction to Imuran.  I've never taken it and have a heard a lot of mixed results here.

Have you ever been on Pentasa? I think you said in another post you had already been on some form of mesalamine.    

There should be some more options for you aside from Remicade and Humira. Hope you get to do doing better soon.


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## Heathcroft (Jul 12, 2007)

*The Price of drugs*

I have read several posts quoting the price of Imuran at $89 a month or thereabouts. I am lucky insofar as I live in the UK (sort of, but apart from it in an independent jurisdiction).

Here our drugs are subsidised as are our doctors visits. So I pay £2.50  (about $5) a month for azathiporine and anything else is the same, as long as its on the approved list. If you are on something more exotic I am sure it would cost a fortune too.

Not sure what UK mainland patients pay but I dont think its too much and as much as people may have problems with the N.H.S. (including me when I went to a hospital in London) it is at least free!


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## Kev (Jul 12, 2007)

Imuran and me..  OK, a lot of posts to try to respond to. hope I don't miss any1

I had baseline bloodwork done prior to starting Imuran, then weekly.. all was OK
The allergic reaction was just that... not a side effect or the effect of the drug on any specific organ per se.. i.e.  liver, kidneys, pancreas, etc.. allergy testing is not routine as it is rare..  I had just ramped up to 100 mg when it really hit.

In fact, I started off with a trial prescription.. 30 x 50 mg pills. After 2 weeks at 50 with good blood work and no sign of an allergic reaction, I had just been to the Metro Dispensary to get my next imuran presciption filled. The cost? < $35.00 CDN for 100 pills.  The dispensary. located at the IWK in Halifax, offers meds w/o handling fees, overhead charges, to those whose income qualify. If you are a resident of NS, and within reach of the IWK, this may be an option.
The downside.. No credit/debit card service, cash only! Mon - Fri 8:30 - 4:30

As for pentasa, I am already on Salofalk, another variant of 5-ASA. It seemed to have stopped being effective in my particular case last Nov for no reason.

As for Humira or Remicade, will discover if either of those are options when I meet with my GI.  I've heard the cost of Remicade is extremely prohibitive.. It may be simply beyond my means to afford this sort of treatment.  If anyone in Canada has a ballpark figure on the cost of their remicade treatments, i'd be interested to hear the numbers...

On last note.. Hey Maggie Muffin.. Didn't realize you were a fellow blue noser..
Hi neighbour

Kev


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## Kev (Jul 12, 2007)

Imuran and me..  Post GI visit.  the verdict?  OK, I have to repeat trial Imuran. I have to take 25 mg sometime in the next 4 - 6 days. Why? If truly allergic, I'll have the same reaction..  rash and intense back/leg pains.. at 25 mg that I did at 100 mg.  If I do, then Imuran is off of the table permanently as an option for me.  

OK. If confirmed allergic to Imuran, my remaining options are as follows: (and in no particular order)..  Drug wise, my choices are either Remicade via an I/V infusion OR Methotrexate via injection.  Methrotrexate has been used widely in Crohns for decades..  Success rate is 2/3 initially, then 2/3 after 1 year.. 
Remicade (aka Infliximab) has been used less than 2 decades, and it offers the same success rate.  The downside... nearly equal healthwise for both. A lot of side effects, long term affects to watch out for. with it's longer history,
a lot of docs will prefer Metho...  but you have to watch for scarring of lungs and liver..  bloodwork and periodic biopsies.  as for remicade, infections are a possibility, as are allergic reactions..  You might have had it once, or twenty some times, when it CAN cause allergic response.  I don't know the numbers on treatment, risk vs gain, on long term use... (i.e. more than 2 yrs running).
Anyway, I have no idea on the 'real' dollar cost of metho, but remicade does cost in the 1,000's...  The only way this latter drug is a viable option for me is if I get into a program or study where the cost is covered, else the drug co. offers it as part of a compassionate program.  My doc is looking into both of these for me...  Failing that, metho seems the only option short of surgery at this point in time..  I meet with my GP next week to see if we can set this up

That pretty much covers the latest..  There must be others out there who've run into this or similar scenarios..  A choice betweeen Remicade or Metho???


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## soupdragon69 (Jul 12, 2007)

Fingers crossed Kev for the retrial...

Wasnt given a choice between remicade or metho myself. GI favoured the remicade think there are other side effect issues with the metho but cant remember what. We are VERY fortunate here in the UK with NHS paying so much on our behalf. There is no way I would still be alive between my asthma and thyroid and crohn's probs if I had to pay for my meds.....

Really feel for all of you that have to make that choice, just dont have the words to express myself on that front....

Jan


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## flying4frogs (Jul 12, 2007)

Kev;
In BC, the remicade will set you back 1100 per vial * 5 vials or about 5500 per infusion. BC provicial gov pays for the majority of the cost of remicade (dependent on your income). I paid on average about 8000 per year before the gov picked up the rest of the tab.
I am no longer using remicade as I have developed antibodies to it so my GI has me in a trail for HUMERA. I am hoping this works as it made with Human materials, self administered and runs about 800.00 - 1600.00 for the same time period of remicade.
Anyways, good luck and I hope you feel better soon.

Nelson aka Flying Frog


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## gabtug (Jul 19, 2007)

*Me and Imuran = Hospital*

Was diagnosed with Chrons in 03.
Took immuran to stabilize it, and about 6 months after I had to go into hospital for what I thought was a Chron's flareup.
After treating the Chron's flareup, all the symptoms were still there (pain, bowl movements, etc.). After 10 days in hospital trying to figure out why my blood-test results are great but yet all the symptoms are there, we decided to stop the medication.

Day 2 after not taking immuran: All side-effects were gone.

Looked like immuran mysteriously put me into hospital...
Just posting this to tell you that not all is well for all with immuran.
Always look on the bright side of life 

Oh, and remicade: worked wonders for me.


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## Kev (Jul 24, 2007)

Imuran and me.. Experiment day today.  Took 25 Mg of imuran.  within 1 hr felt dizzy & nauseau.. within 2 have moderate leg cramping..  that's status quo for today..  Let's see if I deteriorate as the day progresses, maybe even a fun filled day at the ER (OK, that's a bit premature.. not sure if the 'symptoms I feel are real or anxiety produced - the mind can be a powerful thing... even mine). If the rash comes back, or the pain spreads or increases, then I'm imuran allergic. If it doesn't, then I repeat the process tomorrow.


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## Nancy Lee (Jul 24, 2007)

Gosh I don't know..what to do.  :confused2: 

I have an appointment with my GI in September
and I'm supposed to let him know if I want to go on Imuran.
He gave me the summer to think it over.

I'm just on Asacol now and doing quite well...but,
as he said at my last check-up, they are finding that Asacol
does not do that much for Crohn's and has long lasting side effects on the 
kidneys or liver..I don't recall which...LOL..maybe it was memory? :tongue:


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## Kev (Jul 25, 2007)

Imuran and me..  OK, no doubt about it..  I'm allergic to imuran aka 'azathioprine'
Pain in my feet, calves, knees and thighs became extreme... barely able to walk.
24 hours after taking it, the pain level is still hard to deal with... I double dosed on Tylenol 3..  It helps a little.  guess only the passing of time will aleviate pain.
Soooooo, except for responding to anyone who posts on here, this 'officially' ends my imuran diary.  Real shame, as the alternatives are far less attractive.


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## soupdragon69 (Jul 25, 2007)

Kev, 

Am so sorry the imuran hasnt worked out for you. What will they do next do you think? Hope the pain eases soon for you. Hang in there. Thinking of you.




Nancy,

Hope your next GI app goes ok and you manage to decide regarding what is best on the Aza front for you.


Jan


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## Kev (Jul 25, 2007)

Thanks to NL & SD..  Hey Nancy, if the imuran works for you, then I've got a 3 month supply you're welcome to...   In looking over the choices left (in my case)
imuran was THE drug of choice..  Sometimes get the feeling there's a little bit of a black cloud hanging over me..  Then I snap out of it, and realize life goes it's own way.  My experience with Imuran is atypical... most do just fine on it, OK?

And, not to overlook soupdragon... my next step HAS to be methrotrexate. I spoke with my GP yesterday.. he assured me that coming in for injections on a weekly basis is not a problem.  I still have no ballpark price on the metho.. But I do know that Remicade just isn't viable financially for me, unless my GI can get me into a program.. or plead my case with the drug manufacturer. I know that she is working on this, but it's more of a contingency in case the metho doesn't pan out.. (hoping that black cloud has moved on before that).


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## soupdragon69 (Jul 25, 2007)

Hi Kev,

Its good you were able to confirm the plan with your GP the other day so you arent left hanging in the air wondering what next. Would be interested to know how you get on with the metho if you are up to it....

Saw my GI nurse monday and she is getting together with my cons to discuss where we go from here. They need to decide whether I just get the 3 doses (which have had now) or whether I continue the remicade at 8 weekly intervals for a year and then review again. She is going to let me know in the next week.

Meantime I was at my GP yesterday evening and my pred has just gone back up to 40mg from 10mg because he now thinks I have a bacterial chest infection as my asthma has just kicked off the last few days and he has put me on Augmentin antibiotic GGGGRRRRRRR

Am flying home to Ireland at 8am this morning and can you tell am a bit hyper and cant sleep and of course guts now playing hooky! Havent been home in almost 18mths so looking forward to it. Thankfully GP has written a letter to say I can fly etc. The rate I am going I will be running down the runway myself and flying home without the use of the plane between own gas supply and high energy!!

Keep in touch.


Jan


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## katiesue1506 (Jul 25, 2007)

All I'll say is Remicade was a wonder drug for me... definitely worth the cost n my book, however now I'm on Humira... the injections sting so soooo bad, but again, better than hurting.


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## Sojourn (Jul 26, 2007)

The sounds like a really bad reaction to Imuran.  Sorry to hear of it.  Hope it's tapering off by now.

I haven't even looked into how my insurance would deal with Remicade.  But I'm on Cobra now and could have another carrier at my next job.  

If it worked that well, I really would like to get on it.  But my doctor says, once you're on it, you're on it for life.  I guess other than Humira.

But all conventional medicines have to be exhausted before my doc would put me on Remicade if I could afford it.  However, if the fistula doesn't seal off with the steroids, he said trying Remicade could be an option as opposed to a resection.  What a complicated disease.


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## Kev (Jul 27, 2007)

Thanx once again to everyone..  welll, the pain has passed.. took about 48+ hrs
This time I didn't have the complication of my back going out and clouding the issue..  pain was restricted to my feet, legs.  I would wonder if anyone who is on imuran and experiencing mild/moderate leg pains whether this was disease or cure related.  course, what's the sense of wondering?  It's not like you can quit taking your meds to see if they are really the cause of leg pains, not crohns. It would take days for the effects to wear off if it was the imuran anyway..  Like, I did not expect 25 mg to cause me that much pain, and for it to last that long. Hate to think of the potential pain levels at 250 mg of it.. or how long it might have lasted.  Literally, I was barely able to stand or walk. I have to fess up that the allergic reaction really has me down a little.. I was so hopeful of this drug giving me time, options, etc,,.. Pre-reaction, thought I could handle the allergic reaction as just the cost of getting the benefits of imuran..  But the crippling pain burst that bubble PDQ. Imagine having IBD and not being able to run to the bathroom...  Besides, if I can't walk, then I can't work...  Anyway, anyone else contemplating imuran, or currently using it, then god bless.  my case is pretty unusual.. not your typical reaction, OK? As for those taking metho or remicade, thanx for the input..  and kind thoughts..


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## katiesue1506 (Jul 27, 2007)

I just thought I'd stick my nose in a bit here, but when I was on Imuran, I had very bad knee, leg and ankle pains... so bad I wasn''t able to move one time... and I went to a Rheumatoid Arthritis doctor and he said it was just crohn's related. But I had to ice up my legs and take tylenol everytime it happened... then it gradually just went away. But it was VERY bad pain... the only pain in my life where I've actually cried from it... so I dunno if that helps any.


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## Kev (Jul 28, 2007)

thanx Katiesue.. A nose as lovely as yours you can stick in anytime.  the pains you describe seem to mirror those I had...  this time it lasted about 2 1/2 days.
last time it lasted nearly a week...  and I did have a fresh outbreak of the rash..

So, in your case, at some point, it eventually went away.  Just a wild assed guess on my part, but I believe your crohns related pain was actually a form of allergic reaction to the imuran...  that eventually sorted itself out. Maybe?

I think I need to discuss the possibility that IF I were to try another extended trial of imuran, that my reaction to it MAY in time settle itself too.  I doubt if my GI would agree/approve...  but I do have a 3 month supply of the stuff..
Problem is...  Welll, when I have that pain, I really can't function.. nor work.
If I can bear the pain (and I have a pretty high pain threshold, for a male) & I can afford the work hiatus, and it did settle down to tolerable levels, then it still may provide me an alternative that I could live with..  Wonder what my GI would think of this strategy?  And what if, instead of settling, it increased?? 

The associated rash gives me pause too..  It could be a dormant disease from my youth...  like measles, ruebella (sp?), chickenpox, scarlet fever (to name a few)...  I've heard that some of these (like chickenpox) never go away, just lay dormant.. that one's imune system keeps them in check. however, if you weaken the immune system, they MAY return... Life with this disease WOULD be oh soooo much simpler if the questions raised and the issues faced were either straight yes/no scenarios...  not complex, convoluted things they are!

Think i'm rambling.. Must be the mini heat wave getting to me..  forecast is for another 90+ F degree day here, and we Canucks just aren't used to that!


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## katiesue1506 (Jul 28, 2007)

Aww well thank you for telling me my nose is lovely  

Yes, my pain went away... but I also forgot to mention that I have rashes too, but I usually only get those right before a horrible flare... kinda my body's way to signal that the storms are coming I guess. but anyhow there was a three or four month period when I had to keep ice packs ready in my dormitory tiny freezer for the bad pains... although it didn't  help much that I had to climb into a lofted bed to relax and soothe away the pain.

SIDENOTE: If anyone here has Crohn's and is going to college, here's some tips:

-don't use a lofted bed if possible (hard to run to bathroom at bad times)
-don't eat the dining hall food
-if possible... don't live in dormitories (infested with bacterias from others and the bathrooms aren't private)
-let professors know if it will be a problem (mine gave me a D in the class because I was in the hospital a whole week)
-No matter how much you want to stay in becuase you feel bad, go out with friends and do stuff, spend time outside on campus (makes you feel better and happier)


ok sorry about that big sidenote on your thread Kev... had to post it. I'll shut up now


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## Kev (Jul 28, 2007)

Hey KS...  Your tips on dorm life & IBD are far more pertinent than anything I'd have to contribute...  So u aren't hijacking my thread.. very far from it, okay?

as for my rash... it's not related to flares.. never had anything like it pre imuran.
Stopped imuran, it slowly faded away.. and it only appeared in relation to pain.. No rash in any area where there was no pain.  Go figure. Started imuran again..  fresh rash appears..  Now, if yours came went only with flares, then its different from mine...  Or, did your imuran levels change with each flare?

As for the pain levels...  perhaps because of my size, the crippling nature of the pain was distorted in my perception.  Figure 6' 3" 240 lbs puts a lot more strain on feet, ankles and knee joints, etc., that a mere slip of a thing like yourself..  Essentially all my below the waist joints felt like..  well, if you have ever really hit your funny bone, thats' what it felt like, just wouldn't taper off

I tried hot & cold packs alternating, I tried tylenol 3 with codiene, even best efforts of my chiro had no effect on leg pains..  with massage & TENS units.
Back soon was great... legs stayed that way until the imuran slowly wore off


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## katiesue1506 (Jul 29, 2007)

Well yeah my rashes were completely Crohn's related... I believe you definitely have had an allergic reaction or something, all my symptoms were deduced as not Imuran based... because my Imuran dosage stayed the same the whole time, I was on 150 mg all throughout.

I hope that you get to the bottom of it all, if you haven't already. and thanks for hosting my hijack up there


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## Mazen (Jul 30, 2007)

After almost 3 years on Imuran,my doc stopped it today. It seems it's affecting my liver more than expected (High Bilirubin), and this has already happened before, so he doesn't want to risk it. Now I'm back on Pentasa only......


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## Kev (Jul 30, 2007)

Mazen, sorry to hear that. Does your doc intend to try something else with pentasa? I have been told that the 5ASA products themselves only reduce inflamation, and an immuno suppressant therapy is typically added to try to attain a remission. Mine has me still taking salofalk, and the intent was to keep taking it in conjunction with the imuran.  Even when/if I switch to methotrexate


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## Maggie-Muffin (Aug 5, 2007)

Hi Kevin,Can you post when you find out the cost of either drug please.As I'm also from your area I'm interested in any options there is.Good luck


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## Mazen (Aug 6, 2007)

Update. I'm back on Imuran , after the new blood tests showed normal Bilirubin levels!!!!! My doctor cannot explain why the blood tests done earlier showed very abnormal values!! But I did them when I had a fever, and it seems I had some kind of viral infection that messes up my body. It seems any virus or bacteria w e catch with Crohn's , seems to have strange effects on us...

So, now I'm back on it again, and will have another blood test next month to see that everything is still OK with my liver. Let's see....


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## soupdragon69 (Aug 6, 2007)

Hi Mazen,

We talked about this before on another thread.. I heard today that my cons wants to keep me on Imuran 200mg for now rather than move to the planned 250mg once my remicade was done. My Bil and ALT keep bouncing about and he doesnt want to rock the boat. Has also decided I am to continue on remicade every 8 wks now. Time will tell eh?

Really hope you level out.

Kev, 

Hope you start your metho soon, have been thinking about you.


Jan


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## Kev (Aug 6, 2007)

OK, here's sort of a joint reply to Soupdragon, Mazen and Maggie Muffin et al...

welllll, not going to jump right into the Metho therapy immediately (side note to MM.. no idea of the cost of the metho treatment yet..  will try to remember to pass that info along to you as soon as I have it.. do know that by going to my GP for the shots that I'll save the cost of syringes, alcohol, swabs, etc.. but I'd have to factor in the cost of the 'weekly' trips there)..
Send me a private message with contact info and I'd do my best to get any info on the cost to you...  

anyway, back to the metho and the kind thoughts of Soupdragon.  Heres what my GI and I have compromised on.  Going to attempt another taper off of pred.. then keep fingers crossed that I won't flare out of control again immediately...  IF I don't, then we'll postpone the metho..  IF I do flare, then it becomes MY next step...  (god willing, I will be among the 65% it works for)
IF I flare, and the metho doesn't work, then I don't know what comes next. I just don't see remicade as a prospect, as the costs I've heard are too high.. I expect that the only recourse available would be surgical.... but I'm not sure I can handle that prognosis/possibility...  and I'd hate to go thru with it only to learn that my UC was actually CD... (best intentioned & brightest doctors before have been wrong on my diagnosis, and the outcome of their treatment)..

As for (last but certainly not least) Mazen...  If one takes into account the number and types of immuno suppressant therapy we are on for CD, UC, etc.,
then factor in the number of trips to ER, doctors offices, GI clinics, etc., we go to in our typical routine, AND the number & types of germs/bacteria that we come into close contact with as a result... then it comes as no surprise to this ol fart that we catch a lot of stuff that's on the go.. and our chronically ill little bodies are up & down like Otis elevators with this or that, whether its directly related, indirectly related, or not related at all to our primary disease.

Like, frinstance... when I started on imuran, and had to have weekly bloodtests...  every freakin trip for me was pretty risky..  I'd go sit in the lab, surrounded by folks with everything under the sun, with my compromised old immune system (thanks to imuran & pred & illness).. and look around at all of the warning signs about the mumps outbreak, or the warning signs for the flu.
I mean... sheeesh!  My last two extended stays in the hospital I was exposed (but thankfully did not catch) to some very nasty 'in hospital, inhospitable' types of bugs.. super bugs  ... like MRSA..  AND I've heard anecdotally that post hospitalization infection is REALLY the leading cause of death in North America...  Man, somehow my reply has turned into a rant against our medical system...  So, I guess what I'm trying to say is whether I'm copacetic with it being the CD, UC or whatever that causes our bodies to yo-yo so much OR is it our bodies yo-yo'ing because of all of the meds we take for our crohns, etc.

Sort of a proverbial Catch 22...  Or am I being a pesssimistic ol fart today???


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## soupdragon69 (Aug 6, 2007)

Hey Kev,

Good to see a decent plan set out for you... 

Regarding the pessimistic ole fart thoughts I agree with the Catch 22 but think I did some dishing out of my own in the last couple of weeks as I came down with yet another chest infection - GP upped the pred from 10mg to 40mg AGAIN and put me on more antibiotics - and guess who's mum ended up with a chest infection and cold a few days after she went visiting her! OOPS.

It can be very hard sometimes too to try and tell if all the aches and pains and feeling grotty are side effects of drugs or if you are coming down with something or if its IBD related. As you say we end up like a ping pong ball back at the quack!

Keep us posted.

Jan


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## Maggie-Muffin (Aug 7, 2007)

Thanks Kevin,will get the contact infro to you.Hope the pred tampering works this time for you.Are you going to do another diary? Funny they won't put me on preds unless they really have too,then only very short term.My doctor says it's too big a risk for me that my bones will turn to jelly.I'm very small boned and underweight now.


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## Kev (Aug 8, 2007)

Hey MM...  Have you had a bone density scan?  If not, then suggest to you doc you get one...  then sit back and wait.  mine went in the works last November. my appointment? Next november..  The pred is pretty wicked stuff. I wonder how the athletes who use it illegally deal with it?  Anyway, I hadn't thought of doing another 'diary'..  Did the pred taper diary bit...  even if this taper differed from my past ones dramatically, I don't know if anyone would benefit from posts of my next experience..  which I started yesterday.
If/when I start metho, I might post a daily diary of it.. I could see others on this site who are contemplating it deriving some benefit... even if just from knowing that someone else is going thru it.  I've heard from some folks who are on it for other illnesses third hand..  you know?  like someone who knows me knows someone who is taking it for rheumatoid arthritis.. that sort of a deal...  So, it has been around, others apparently do use it, and what it costs I still have no clue on.  I guess my priorities at the moment are to taper off of the pred..., NOT have a flare,... AND if I do, then pray the metho works AND I can afford it..  Otherwise, forget about it cause worrying isn't going to help..


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## Darkeffx (Aug 8, 2007)

> -don't use a lofted bed if possible (hard to run to bathroom at bad times)
> -don't eat the dining hall food
> -if possible... don't live in dormitories (infested with bacterias from others and the bathrooms aren't private)
> -let professors know if it will be a problem (mine gave me a D in the class because I was in the hospital a whole week)
> -No matter how much you want to stay in becuase you feel bad, go out with friends and do stuff, spend time outside on campus (makes you feel better and happier)



wow...thats basically a verbatim list of everything i didn't figure out until it was too late


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## old hat (Aug 9, 2007)

Here is a study that may be of interest to people who can't tolerate 6-mp or azathioprine therapy.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=11515842&dopt=Citation
An open-label pilot study using thioguanine as a therapeutic alternative in Crohn's disease patients resistant to 6-mercaptopurine therapy.
BACKGROUND AND AIMS: A substantial number of patients with inflammatory bowel disease (IBD) fail to achieve a complete clinical response with 6-mercaptopurine (6-MP) and azathioprine (AZA). Inability to achieve therapeutic 6-thioguanine nucleotide (6-TGN) levels due to the preferential overproduction of 6-methylmercaptopurine ribonucleotides (6-MMPR) upon dose escalation characterizes a newly described subgroup of IBD patients resistant to 6-MP/AZA therapy. Treatment with 6-thioguanine (6-TG), a related thiopurine, which forms 6-TGNs more directly may be beneficial in such patients. This pilot study evaluated the safety, tolerance, and efficacy of 6-TG in the subgroup of Crohn's disease (CD) patients failing to attain adequate disease control with traditional 6-MP/AZA therapy. METHODS: Ten CD patients with preferential 6-MMPR production upon 6-MP/AZA dose escalation were enrolled in an open-label pilot study. Seven of 10 patients had experienced dose-related 6-MP toxicities. RESULTS: Seventy percent of the patients (7 of 10) responded or were in remission at week 16. Clinical response was evident by week 4 in most. 6-TGN levels were nine-fold higher with 6-TG treatment than with 6-MP, whereas 6-MMPR levels were undetectable. No patient developed a recurrence of hepatic or hematological toxicity. CONCLUSIONS: 6-TG was a safer and more efficacious thiopurine in this subgroup of IBD patients resistant to 6-MP therapy. Larger controlled trials are warranted to further evaluate both the short- and long-term safety and efficacy in this subgroup of patients as well as a broader spectrum of IBD patients.


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## Kev (Aug 9, 2007)

Interesting...  Food for thought.  I'll mention it to my GI if I'm in a position where I'm desparate enuff to try a long shot..  However, I don't think any 'reputable' GI would prescribe it when there remain other tried/documented alternatives, on the basis of a prelim study consisting of 10 patients.  Thanks for the info old hat


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## Maggie-Muffin (Aug 9, 2007)

Hi Kevin,I already had a bone density test done a year ago.it was fine except a little low in right hip area.Was put on a calcium inhalor.Have another one done later this year.Now I take an inhalor for cacium,pills for potassuim,and B12 shots plus iuram.


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## D Bergy (Aug 9, 2007)

You need to have enough Magnesium to properly absorb Calcium.

Many people with Crohn's  are low on Mg especially if you have chronic diarrhea.

Best Regards

D Bergy


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## katiesue1506 (Aug 10, 2007)

Yeah but I was told that I wasn't supposed to take Mg because its hard on the digestive system.... thats why I wasn't to take certain multivitamins because it upset my stomach.


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## Kev (Aug 10, 2007)

Hey Katiesue1506... Years ago, a friend of the family who had mild anemia was put on iron pills..  just OTC iron vitamins.  Wound up in the ER with 'bleeding' ulcers... caused by the iron pills..  Seems some folks are allergic or sensitive to iron...  or other simple vitamins and supplements.  Eventually they switched her to B12 injections.. no problems. She responded to them A-OK, and her anemia was resolved. usually, they only go the B12 route by injection for pernicious (sp?) anemia.  Anyway, it may have been a case of throwing out the baby with the bathwater..  Like, the mg sensitivity could have been due to something else in the vitamins..  perhaps even iron. Have you tried to source mg thru other sources?  like alone in a pill, or adding mg rich foods to your diet?  Has anyone else had an issue with mg? and if so, how'd you get around it...  you'd think that someone would offer a good mg/calcium combo..
As for MaggieMuffin...  did you have the same year long wait for your density test?  Or did you have it done outside of the HRM area? I heard that if I went to my doc, and asked for a referral to the southshore or other outlying areas, I MIGHT get one done in as little as 3 months..  also heard (anecdotally) that because I was a male (and the test is predominantly used to check/diagnose brittle bone disease in women) that my case would be low on the priority list of scheduling... not sure about the source of that info, it doesn't sound right.
I mean, I understand that most of the people needing the scan are women, I just can't see some buearacrat somewhere being allowed to discriminate just by gender...  But I guess it could happen. it was a women who told me..


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## D Bergy (Aug 10, 2007)

I would get a second opinion on supplimenting Mg.  I think not having enough would have worse consequences than possibly being hard on the stomach.

I would look for multivitamins without Gluton, which is a more common cause of stomach upset.  You could also look for foods high in Mg.

Good Luck

D Bergy


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## Maggie-Muffin (Aug 22, 2007)

Kevin,I had it done In the Colochester Hositpal{Truro] without having too much of a wait think it was only a month's wait.Truro is about an hour from Halifax.Maybe you can try there for yours too?


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## Kev (Aug 22, 2007)

Yes, I was told I could get it done in Lunenburg or the South Shore area in just 3 months...  but now I'm about 3 months away from my local appointment, so its a moot point.  Used to think moving to Halifax area would improve the level of health care.  Just the opposite.  May have the best hospitals and doctors, but the waiting periods are terrible.


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## floored (Aug 28, 2007)

*Imuran and me*

So I feel that after lurking around on this forum for some time, I should make a contribution.

Since Kev's now off Imuran, this thread could die a natural death, but now I come along to breathe new life into it: I start on Imuran tomorrow morning.

So here's a history:
4 years ago - Chronic D for a few months, and it started while I was travelling around Europe. So I had to go to a hospital in Dublin, where they thought it might be cancer - that was a fun night! Then they cut me open, and found that it wasn't cancer, but still didn't have any real idea. 
After getting home, and not getting any better, I ended up in the ED, where they immediately assumed it was some tropical disease (I did have a one hour stop over in Singapore afterall). 
Eventually, it turned out I had Crohn's, and was put on Salofalk (1g, 3x daily) and Prednisolone (40mg, dropping 5mg each week until I was weaned off it).
Years passed, and the Salofalk kept me basically like a normal human, until I decided to see if it was me who was keeping me healthy, or the Salofalk.
Turns out, it was probably the Salofalk.

After being quite lax in my drug duties for about a month, I had a rather disturbing night involving blood, and lots of it.

A few days in hospital later, and back on the Prednisolone and Salofalk (plus Vitamin D and Calcium suppliments to counteract the Pred side-effects), and I'm physically better than I pretty much have ever been (The mood swing/manic depression side effects of the Pred are back though).

So now I'm going to again wean off the Pred and start on Imuran. 
I'd prefer to just go back to the Salofalk by itself, but since Imuran is what the doctor recommends, I figure I'll give it a go

Hopefully this will be a successful diary, and show that Imuran is good for some people. I *really* hope it is.


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## old hat (Aug 29, 2007)

katiesue1506 said:
			
		

> Yeah but I was told that I wasn't supposed to take Mg because its hard on the digestive system.... thats why I wasn't to take certain multivitamins because it upset my stomach.


The best way to get additional Magnesium is to eat whole foods that are rich in it.  Many dark, green leafy vegetables like Swiss hard or Turnip Grees contain lots of Mg.  Summer squash and steamed brocoli are also very good.

Taking pills is a distant second.


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## old hat (Aug 29, 2007)

I have been on 6mp which is a metabolite of Imuran for 6 mothns or so.  I just don't have anything interesting to write about.  I haven't noticed any obvious side effects.


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## Kev (Aug 29, 2007)

Hey floored, welcome to the forum..  and I officially pass this thread on to you. Hope the imuran works for you...  and, the weekly bloodwork associated with it gives one an excuse to travel (at least to the lab and back). anyway, best of luck..  with the imuran, and the crohns..  Wish I could pass on my 3 months supply of those little figure 8 shaped pills, but I've heard that it's illegal to do so


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## floored (Aug 30, 2007)

So it's day two of my Imuran, and it's an absolutely glorious day outside. Unfortunately, on the information sheet I was given with my Imuran, it mentions that "the combination of lots of UV light and azathioprine/6-MP may increase the risk of skin tumours. Even though this does not seem to be much of a problem in people with Crohn's disease or ulcerative colitis taking azathioprine/6-MP, it is better to avoid too much exposure".

Even just driving this morning, I felt especially sensetive to the sun. Not sure if it's because this is the first day of really nice weather in a few months, or if it's due to the Imuran. Possibly a little of column A and a little of column B.

So, thus far, the only side effect is that I can't enjoy the outdoors on days such as today as much as I would otherwise.


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## Kev (Aug 30, 2007)

Yeah, my GI mentioned this to me as she put me on it, and recommended that I use a good sunscreen at all times, and that any changes in skin conditions that I noticed were to be brought to her attention or to my GP's immediately. Having said that, my 'uneducated' understanding is that the increased risk is actually a relatively 'low' thing number wise.. but it is an INCREASED risk. What do I mean?
Welll, if anyone, regardless of health, noticed a change in a mole, or whatever, the common medical advice is to get it checked out ASAP.  but for someone on this drug NOT to is a major faux pas (mistake).  In short, if you have a suspicious mole, change in skin, etc., you should be on your guard. If you have that and are on Imuran, you should be doubly on your guard, okay?
Anything else just isn't good old fashioned common sense.  moving to a cave because you are on imuran isn't common sense either, it's an over reaction.


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## floored (Aug 31, 2007)

Imuran and me...
Day three - bad weather - no other side effects. Although I shouldn't really blame the weather on Imuran


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## Mitchy (Sep 18, 2007)

*Imuran (aka Azathioprine).*

Its great to read so many reports about Imuran.  I am due to start it next week, and was concerned after being told about the weekly blood tests and the side effects it can have.  I am currently taking 10mg Prednisolone having started on 40mg and reducing it by 5mg weekly since being diagnosed with Crohn's in June.  However when I saw my GI she immediately put me back up to 20mg (staying on that dose for 2 weeks and then reducing by 5mg weekly).  I constantly find that when I reach the 15mg stage my pains get steadliy worse ( am going through quite a bad attack at the moment on 10mg.  Anyway, start on Imuran next week, so it has been great to hear about other people's views.

:ycool:


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## jjs16 (Sep 18, 2007)

Hi Mitchy,

Welcome.

I have a similar issue with prednisone, once I get down to 10mgs my gut starts to act up again. I've been using Imuran for about a year now and it doesn't seem to do anything for me. It's suppose to kick in as a longer term solution to pred, but it hasn't helped. My GI told me it does take a while for Imuran to work, so I had been taking it along with the pred to allow for the Imuran to take effect, it didn't.

In any case I'm going to try Remicade next, I hope it works.

As you will note in this forum meds and techniques vary and each person seems to have different reactions or outcomes to similar treatments. I hope Imuran preforms as it should and it helps you resolve your flare.

On another note my wife and mother- in-law will be visiting you're fair city in two weeks. They were born in Edinburgh. I haven't been but my wife raves about her homeland.

J


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## kskitt (Sep 18, 2007)

ive been on Azathioprine now for 2 weeks and so far i havnt had any problems.I had the first blood test whilst being on it yesterday and will get the results tomorrow to see if i can increase my dose from 75mg to 125mg a day.

Im still on the budesonide, but im gradually weaning off this


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## Kev (Sep 19, 2007)

Good luck kskitt. got my fingers crossed for you.  Keep an eye out for rashes.


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## kskitt (Sep 19, 2007)

thanks kev.


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## floored (Sep 19, 2007)

So it's been about 3 weeks now since I started Imuran. 
The weekly blood tests have apparently shown that all is good. Although given that I was OK on just mesalazine for four years without Imuran, I'm not sure if it's just that I'm going back to how I used to be, or if the Imuran is doing something other than lightening my wallet.
Still, at the dose I'm on now, it's only one tablet a day, so I'm not particularly fussed


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## Mitchy (Sep 19, 2007)

Thanks everyone for your information and support.  I am getting pains daily at the moment, so can't wait to see whether Imuran will help me into remission.  I am now down to 5mg Pred, and seeing my GI on Tuesday.  Still worried though about these so called side effects which may or may not happen!!!!


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## Kev (Sep 19, 2007)

Hey floored..  Sounds good.  What dose (mg) of imuran are you currently on?

And how much are you paying for imuran?  I got a 3 month supply for < $30 Cdn


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## floored (Sep 20, 2007)

Hi Kev,

I'm on 50mg a day until next week. Just to make sure that I don't have any allergic reactions or the like to it, which is apparently quite common.

The full cost in Australia is over A$70 for a pack of 100x50mg tablets, but the PBS covers more than half of that, so it costs just over A$32, which is just under C$28. 
Assuming you're on 50mg/day (which I doubt, since I'm supposed to be upping my dose after next week assuming all goes well), then we pay about the same.

Floored


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## Kev (Sep 20, 2007)

Well, I did 2 weeks at 50 mg with no problems... but when I bumped up to 100, I developed a severe allergic reaction.  now I can't tolerate as little as 25 mg of it

Anyway, I hope you all the best.  Keep your eyes open for suspicious rashs, OK


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## MarkyB (Oct 17, 2007)

hi everyone,
I had a week on 25mg per day and then straight up to 150mg per day - which I have been on now for the last three weeks. The first day I went up to 150mg I was violently sick about 3 hours after. Then over the next couple of days a similar thing. I have stopped being actually sick but every day I still feel sick about 3-4 hours after taking. I haven't had any blood tests yet! I see my Specialist 30th October when he will give me a date for my first infusion of Remicade.


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## soupdragon69 (Oct 17, 2007)

Marky B,

Thats a really fast hike of azathioprine from 25mg to 150mg (most of us seem to increase by 50mg every couple of weeks - I could be wrong though). I get nausea with it too but changed to taking it at night so it has less of an impact and it seems to have worked.

Its very odd also that you arent having weekly blood tests to keep an eye on your liver fuction and full blood count. 

I will be having my 5th infusion of remicade on the 30th (have to be on the unit for 4pm) so will be thinking of you!

Hope you get sorted soon.


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## Kev (Oct 17, 2007)

Yeah Markyb, I agree with soup.  Course, every case and doctor is different, but that seems like quite a jump in dosage.  And my doc insisted on testing my blood every week.  In fact, she didn't put any refills on my 1st prescription till I demonstrated that I was getting my weekly bloodwork, and she saw my results.
Are you sure nothing was lost in translation with your doc when you were put on Imuran?  Like, bloodwork, and maybe you didn't hear that part of the talk? I would doublecheck ASAP on the bloodwork thing, as Imuran can be nasty!!


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## katiesue1506 (Oct 17, 2007)

See its weird, becuase when I was on Imuran I never tapered up or down. I went form none to 150 mg and then I just stopped taking it when I was put on Remicade... are you supposed to taper? Maybe thats why I had that whole bad freak out after I started taking meds.

--- here's what happened... I was put on 40mg of Pred and 150 mg of Imuran as well as Fosamax and calcium and Vitmin C with some Iron. One day after I started taking all of this, I woke up from a nap at 6:00 pm... kinda late for a nap, but I woke up and I was all dazed and confused. I knew kinda what I was doing, but not enough to make good decisions. Anyways, I woke up and my roommate asked me if I was ok... apparently I looked bad? I dunno... but I said yeah and I went to the dining hall (I dunno why I did). So I was walking down the hallway and it seemed to kinda twist and lengthen. I stopped for a minute to collect myself. Then I made it to the dining hall and got some mashed potatoes (it was all I could stomach at the time). I took a bite, seriously... ONE BITE and a BIG HUGE wave of pain came... the worst I've ever felt. So I hobbled to the bathroom and ended up on the floor for 45 minutes. It was pretty scary. So maybe it's because I didn't taper?????


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## Kev (Oct 17, 2007)

I went off 100 mg of Imuran cold turkey, and was told it was perfectly OK to do that.  even then, it took 2 days for it to work it's way out of my system. As for slowly ramping up, my understanding is that it takes a while for imuran to kick in, and if there's no urgent need, most docs simply prefer to take it nice & slow just in case your body develops toxicity (sp?) or has any other bad reaction. If your situation warrants it, and the doc thinks you can handle it, then loading up at the start is an acceptable method.  I'm sure there must be others on here who either done so first hand, or heard of this alternative.


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## MarkyB (Oct 17, 2007)

KEV n SOUP, I know the hike seems to be at odds with the experiences of others but my Specialist wasn't at all concerned by this and he wanted me to start the Remicade ASAP. As for the blood tests, I had had quite a few in the run up to starting on Aza, and he didn't think it necessary to start taking any more, knowing I would be going back in 4 weeks to see him!?

Always appreciate other points of view and natural concern. That's why I like using this site!!! Thanks!!


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## soupdragon69 (Oct 18, 2007)

See its interesting what you have said Katiesue. My GI was telling me about 4wks ago that he had been to the biggest Crohn's centre in Europe which is apparently in Brussels. He said that they are finding Remicade is working really well and are going towards using it more as maintainence down the line (proceeded to tell me my Crohns was so bad I am looking at a minimum of 2yrs at 6-8wks infusions). He was also saying that once they get patients into remission they are winding back on the Imuran and using it more for flare ups then down the line. 

He increased my Imuran that day and have gone to 250mg now on top of my Remicade (due 30th Oct again). He said that once I was into remission he would be decreasing the Imuran....

MarkyB, the blood tests are important because the drug can impact on your bone marrow production of red blood cells and can also impact on your liver which I think is why most cons go for gradual increases. Having said that my GI keeps saying he wants my White Cell Count below 4 and preferably in the 2-3 range rather than the normal range of 4-11. Have yet to get there! The joys of not absorbing things well eh? lol

Keep posting am interested to hear what you all think!


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## MarkyB (Nov 1, 2007)

Hey all - saw my Specialist on Tuesday. Wasn't concerned that I had had no blood tests for the past five weeks - but did take a drop or two on the day.

Reviewed fact that I had not had TB test done (typical NHS - waiting list over 1 month) looked at chest X-ray which was OK so decided to go ahead with Remicade infusions.

I have my first next week (hopefully) followed by a 2nd two weeks later and a 3rd six weeks after that. If I am in remission I will not receive any more unless I flare again. Any thoughts on this approach? I know those of you who have had Remicade have said that you receive regular infusions every 6-8wks.

I'd love to hear your thoughts


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## JTKrol (Dec 1, 2007)

Man this thread has so much information in it, it took me quite a while to read.  Very interesting and pertinent to me right now.  I'm taking Azathioprine (Imuran) right now.  I think I ramped up, but don't remember the specific numbers (maybe 50 -> 100 -> 125 mg).  Once I started on the 125 mg dosage (about 6 weeks ago), my health seemed to take a turn for the worse.

I feel like I am getting constantly sick.  In addition, I am extremely tired all of the time.  I have a rash on my arms and chest, but I've actually had this rash ever since I moved down to Texas from Illinois.  So my GI's solution is to send me to a dermatologist for my rash and a hematologist for my WBC count (which is about 11.8k right now, should be between 9.5-10k).

I am fairly convinced that there is a correlation between my current health status and the amont of Azathioprine I am taking.  I'm contemplating switching GI's since mine doesn't seem to listen to much to me.  I feel like she makes her decision before she even walks into the room.  Sorry for the rant but it's relevant to my Azathioprine experience.


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## floored (Dec 2, 2007)

JTKrol,

Have you been getting your blood checked? If your iron/ferritin levels are low, this could explain your tiredness. 
This happened to me, and I had to get an iron infusion.

I've been on Imuran a few months now, and whether or not the lower iron was a result of the Imuran or not, I'm not sure, but that's been the only negative during my time with Imuran.


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## Samantha22 (Dec 4, 2007)

*drugs help*

I went to the Dr. and they took me off of the Pentasa and increased my prednisone and want to either put me on remicade or imuran. I think that is a big risk for someone who is newly diagnosised. She made me feel like I was stupid. She didn't answer any of my questions, so I think I am going to switch drs, but I don't want to start on those drugs right away isn't there something you can take before going to those drugs? They took me off Pentasa because of the migraines severe leg pain and night sweats. I had two bright red stools yesterday and she didn't even think that mattered and that everything was fine. I am so nervous and don't know what to expect, this is all new to me. I definetly don't want to go back to the hospital.Thanks


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## JTKrol (Dec 5, 2007)

floored said:
			
		

> Have you been getting your blood checked? If your iron/ferritin levels are low, this could explain your tiredness.
> This happened to me, and I had to get an iron infusion.


I have been getting my blood checked.  It's been like every 3-4 weeks so far.  I just saw a hemologist today and she is fairly certain that my tiredness is coming from the fact that I've been so sick lately.  I'm definitely not anemic.  I was anemic when I first moved to TX, took iron pills after I found out and all has been really good in that area.



			
				floored said:
			
		

> I've been on Imuran a few months now, and whether or not the lower iron was a result of the Imuran or not, I'm not sure, but that's been the only negative during my time with Imuran.


That's good.  If I can rule out the tiredness being an Imuran side effect, I will be OK staying on this drug for a while.  We'll see what the tests from today turn up.  They took 13 vials of my blood today!  I estimated it at about 60-70mL.


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## floored (Dec 6, 2007)

Samantha,

I'm not sure Imuran is a big risk, and, in my own experience, they started me off on a really low dose, with weekly blood tests to make sure I didn't have any adverse reaction, so I think any risk is minimal.

In terms of your doctor, if you ever go back to her, perhaps ask if she would like to have bright red stools!

Floored


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## Kev (Dec 7, 2007)

There are risks with Imuran/azathioprine, but these are calculated risks. It does require periodic bloodwork, just to keep an eye on things. I had mine on a weekly basis, and had no problems at all at a 50 mg dose. Ramping up to 100 mg put me in the ER...  no advanced notice.  Just.. BOOM. Rash and pain.
Coming off, took some time for the drug to work it's way out, leaving me in intense pain for days.  After it cleared, and the pain went away, as little as 25 mg (test dosage) resulted in the pains coming back immediately. So, my advice is that meds do carry risk, if you must take them fine, but don't let blood work or follow up visits slide.  Overall, in my humble opinion, a worst situation is NOT trying meds out of fear when one hasn't weighed the pros and cons...  OR, taking them irresponsibly, not doing bloodwork, visits, etc., till they STOP working, or some side effect creeps in that MANDATES that you have to stop taking them.  Meds can be a powerfull/effective tool, but any tool used improperly CAN be dangerous.  Like, your mom probably told you not to run with scissors as a child (for good reason).. does that mean you never pickup/use a pair of scissors? I know that my adverse reaction to Imuran was a painful incident, but I survived. And, the fact that I can't take it to fight this disease complicates my life, and hinders my treatment.


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## saidinstouch (Dec 11, 2007)

While remicade sounds scary, it is much less scary than hospitalization.  Imuran is even less of a risk assuming you can tolerate it and get your blood tests.  For me, finally finding doctors who listened to my needs and concerns and also treated me for the symptoms I was showing, not the results of my diagnostic tests was really the turning point in my recovery.

Get yourself a new doctors IMMEDIATELY if your current doctor isn't listening to you and making you feel good.  How can you trust what she tells you if she doesn't listen to you and your concerns?  The most important part of your treatment is that YOU decide what YOU are comfortable with so long as you do not jeopardize your own health and safety.  Take an open approach and just know that the medications offered are not suggested lightly, even so soon into your treatment.  If your doctors feel a heavier hitter is necessary then I would trust their advice and do some research to find out which step you want to take (and which you can afford).


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## Keara07 (Feb 21, 2008)

I knew there would be something about Imuran here - wow, what a thread. 

got to my Gi today and well, bam! Imuran to start tomorrow 100mg, reducing pentasa to 2g but I am to keep the predisone at 40mg ( i was really hoping to taper). Also told to contact my insurance company about remicade (told it will be about 30K a year before coverage - owie)....and he has also submitted a form for an urgent CT (by urgent, who knows? he is think abscess possibilities as I feel like I am going to drop another kid out soon...) , but at least he said to wait to talk to the surgeon about the big colonoscopy. 

What a day! :voodoo: 

This thread is brilliant though as I am leary of this Imuran stuff - too many *risks* - plus it is IMPOSSIBLE to stay away form infectious people - I have 4 kids under 8! LOL. Lots of hints and things to watch for but also, there are the ones who are doing ok. crossed fingers all!


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## DarrylP_Ajax (Feb 21, 2008)

I think the risks of Imuran are a little blown out of proportion like most things in the medical world. I was looking at my doctors big 10,000 medical drug book and was reading the actual % of occurence for that page and half of "side effects you could get on this drug" page you get with the prescription, and some of the nasty ones that originally scared me only happen in like 1% of people.

I am personally on 250mg/day of Imuran and other then a little sluggishness in the morning when i wake up i have no side effects whatsoever and my blood tests come back perfect, so my massive puddle of fear was quickly evaporated



			
				Keara07 said:
			
		

> This thread is brilliant though as I am leary of this Imuran stuff - too many *risks* - plus it is IMPOSSIBLE to stay away form infectious people - I have 4 kids under 8! LOL. Lots of hints and things to watch for but also, there are the ones who are doing ok. crossed fingers all!


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## Kev (Feb 22, 2008)

Yeah, but tho the numbers are REALLY small... one can't ignore them/overlook them.  Get your bloodwork done religiously...  small price to pay for your safety  AND avoid/limit sun exposure.  sound advice even if not on Imuran, just plain foolish to ignore that advice WHILE taking imuran.  All I've got to say


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## Keara07 (Feb 25, 2008)

Who knew? The sun thing wasn't on any of my list of warnings - good to know, Thanks Kev - esp heading into a hopeful early Spring....hopeful that is...
So far, the Imuran seems to be only turning my pee green, and causing more dizziness than usual, and some acne but at tihs point I am unsure of what is drug related and what is IBD - it's a mish mash! ... but has offset the predisone alertness so I can sleep better at night - just wish the friggin nightsweats would go away.
Remicade is looking expensive even with a co-pay....have to wait it out for the surgeon I guess and hope bloodwork is ok with this stuff -


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## Kev (Feb 25, 2008)

I'd check either the Imuran/Azathioprine websites for the urine colour thingy..
Else call your GI's/doc's office... mention it and see what their response is, OK?

As for 'alertness' due to pred, when are you taking your pred? Early morning or late nite?  I always took (take, perhaps, who knows yet for sure) pred in the morning..  the 'alertness', or almost manic need to do SOMETHING, did hit me during the day, but usually settled down by bedtime.  As for those 'nite-sweats'...  I would periodically have them off N on, commonly at nite, but other times too.  Never found anything to combat those..  One minute I'd be having a hotflash (I commisserate with the menopausal big time now) and the next it was like someone tossed me into a deep freeze meatlocker.

Ah, welll.. what can you do..  Anyway, since Imuran/Azathioprine can have an affect on the kidneys and bladder (and the list does seem to go on N on) I'd check into that colourful voiding thingy, just to be on the safe side.


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## Keara07 (Feb 25, 2008)

Hey Kev - Yes, I take the pred in the morning, but it always wipes me out first and then I am up more in the afternoon, and now I am also tired in the evening. I'll take it. Def feel the need to *clean* in the afternoon but have found things to keep me occupied for now - wait till spring cleaning! Thanks for the *hot flash* info - that describes it perfect when it hits in the day but the night stuff just goes all night. 

Had looked up the whole colour thingy and the only thing I found was that some meds can cause it - but no listing for the AZA - it goes away by supper and returns with the first pee after the drug in the am. It's got to be related as it started day one of the imuran last week and hasn't passed. I'll be mentionning it for sure - may have to go in this week afterall but I hope to wait till at least after one blood work. I really didn't think I would react so fast to this...

I am just an odd duck :>)


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## Kev (Feb 26, 2008)

One of the potential issues is elevated bilirubin...   and that 'COULD' alter the colour of ones' urine..  and the body 'supposedly' eliminates as waste this med within 8 hours...  so, if you are noticing time specific changes in your urine, it is something to talk to a professional about, sooner Vs later. Just in case, OK?   I mean, I don't want to panic you or anything.. like it could be something as mundane as the 'colouring' from the pills or something else is causing this (makes one wonder why they put artificial colours, etc.., in all these foolish medications to begin with)


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## Keara07 (Feb 27, 2008)

Thanks - Have called for an appt and blood work #1 is tomorrow - I HAVE to figure this out asap as I seem to be heading down a fast road - the nurse will call me back to see if an appt can be made early next week after the tests come back in unless it goes really bad then well, bloody heck ER. 

I am wondering as other things have become very amplified if the Imuran has kicked up the predisone as my effects are becoming super wild but all fall into the predison list and I haven't really experience much there other then a morning dizziness. Do those two drugs play together at all? I am putting on about 1-2 lb a day (and not eating over 1200 cal), have wicked mania (road rage type) in the afternoon but feel like I have been a marathon by about three and want to pass out. Also pass out in the am within 30 mins of the drugs and it's now become comepletely uncontrolable. And the evenings everything is par - exhausted, confused, blurry etc. 

I really have a *gut* feeling the imuran has effected the way my body is taking the pred so if nothing else, I am strongly inclined to wean off that stuff - it;s been high dose for 5 weeks today. 

On the note of colour.....the one I am on doesn't have artificial colours - i was able to find that out so that's just bizarre...I wonder why they have to put lactose in the drugs though. 

Let's hope I can get an appt - if nothing else, I can manage barring anything weird, for a few days with that comfort. 

If anyone out there has experienced Imuran-predisone simultaneous effects let me know as I am really curious about why all these symptoms have hit the day I started Imuran and are just getting worse.


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## Keara07 (Mar 5, 2008)

Just an update for anyone who may check out this log - saw the doc and I am off Imuran (yea!). Although not known, he thinks the predisone, for me, heightened it somehow and thus the reaction and regression even though my bloodwork was ok. Just something to think about if you start taking it and find you go two steps back, especially with any signs like mentionned in my posts before - especially a fast onset *extreme fatigue*.


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## Kev (Mar 5, 2008)

Well, oddly enuff, I wasn't so much relieved when I came off Imuran, even tho it meant I didn't have to worry about those scary potential side effects, etc..
For me, it meant that I'd lost another tool in the battle to fight this disease, and that I/we (doc and me) would have to come up with a replacement, and go thru the whole...  "what are the potential benefits Vs potential risks" scenario ALL over again.  However, that turned out to be a very serendiptious (sp?) event, as the circumstances helped convince my GI to trial me on an experimental, un-approved therapy, which appears to be working.  See?  all my worrying was for nothing, and gained me nothing.


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## Keara07 (Mar 5, 2008)

Yes, I agree with that Kev, but alas, for me it is looking like surgery is on the horizon. The alternative is remicade, they think, but at 1K a pop out of my pocket it is out of reach. I know it isn't a cure, but he hopes to at least get me into some kind of remission as this 3 month flare now is somewhat intolerable.


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## Kev (Mar 5, 2008)

well, Keara, i'm in the same boat as far as Remicade.. I just can't afford it. As for surgery...  well, the resection thing isn't a big deal.. it was the easiest of my ops to recuperate from..  if it's ostomy.. welll, i'm not ready for that step yet, but many on here have gone that route, and if the disease is just in the colon, it could mean a totally new/improved life (least to hear some tell it). the big question is whether bag or pouch (at least as I understand the options).  to me, at 1st consideration, it seemed a no brainer..  Like, if one can go pouch, why bother with the baggies?  but, I've heard some folks who've gone that route say perhaps in hindsight the bag route is more ... convenient..  Hey, who knows.. the grass is always greener.  Hey, there would be a good topic for a poll, even friendly debate.
See what the 'experts' on here have to say.  Anyway, what will be, will be.

If surgery is the 'best' choice, all the best.  But, talk to your doctor. ask if metho, or humira, perhaps even LDN (if the doctor is willing to go that far) are options that might be explored FIRST, before the irrevocable surgery.

Hey, it never HURTS to ask...  to ask 'why', or better still 'why not'.. FIRST!


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