Imuran and me, a personal diary

[Kev]

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

 

[floored]

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

 

[Kev]

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

 

[MarkyB]

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.

 

[soupdragon69]

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.

 

[Kev]

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!!

 

[katiesue1506]

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?????

 

[Kev]

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.

 

[MarkyB]

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!!

 

[soupdragon69]

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!

 

[MarkyB]

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

 

[JTKrol]

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.

 

[floored]

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.

 

[Samantha22]

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

 

[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 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.

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.

 

[floored]

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

 

[Kev]

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.

 

[saidinstouch]

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).

 

[Keara07]

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!

 

[DarrylP_Ajax]

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

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!

 

[Kev]

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

 

[Keara07]

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 -

 

[Kev]

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.

 

[Keara07]

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 :>)

 

[Kev]

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)

 

[Keara07]

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.

 

[Keara07]

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*.

 

[Kev]

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.

 

[Keara07]

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.

 

[Kev]

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!