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Imuran/Azathioprine/6-MP Support Group

What is the major issue about the sun? Last summer (Early feb here in Oz) I ended up getting severe sunburn on my back and legs in spots I couldn't reach with sunscreen at the beach. I still notice some discoloured skin on my back. Is it because of an increase cancer risk? I'm a little concerned that I haven't got it checked...
If you're worried about... get it checked, because 99.9% of the time it's nothing to worry about and it'll put your mind at rest.

I had two basal cell carcinomas taken off my face a few months ago. I've not been able to get an opinion from any of the three dermatologists I've seen as to whether the Aza is a cause. I think the actual cause was spending the 1970s getting fried in the sun.

So I wouldn't let it interfere with your life... just be mindful that it's better not to have too much exposure (whether you're on Aza or not)... any sort of sunburn is a sign of sun damage, and you don't want to end up looking like a leather handbag when you're a bit older. Sun screens are really good now... you can slap it on and it's not too greasy... you just need a friend to put it on your back!
 
What is the major issue about the sun? Last summer (Early feb here in Oz) I ended up getting severe sunburn on my back and legs in spots I couldn't reach with sunscreen at the beach. I still notice some discoloured skin on my back. Is it because of an increase cancer risk? I'm a little concerned that I haven't got it checked...
Sunburns are bad with or without taking azathioprine - because of the increase of the likelihood of skin cancer.

However, azathioprine use increases the risk of skin cancer. It is unclear by how much. The important message to take away from it is a. be sure to put enough sun cream on you in the summer and don't do 1970s or 80s style sun exposure with full body sun burns... and b. to regularly visit your demartologist to get checked out (every 2 years or so).

The most important factor for skin cancer still remains a fair skin and excessive sun exposure. The good thing about taking azathioprine and knowing that it increases the risk of skin cancer is that once you are aware you are much more likely to take precautions and to get checked out regularly, reducing the stastically likelihood of problematic skin cancer to develop (because skin cancer detected early on can be treated quickly and effectively without much hassle).

Here is an article from 2008 on this subject:
http://onlinelibrary.wiley.com/doi/10.1002/ibd.20444/pdf

and the conclusion

"CONCLUSIONS
While most of the literature on immunosuppression and
NMSC has focused on organ transplant patients, the risk is
likely prevalent among all patients who require immunosuppression.
Studies regarding IBD and NMSC are rare and
inconsistent, but certainly have shown a trend toward an
increase in SCC risk and incidence, specifically in patients
with CD. More prospective studies should be performed to
elucidate this risk. It is important for practitioners to keep
NMSC’s in mind in counseling and screening patients who
are immunosuppressed for any reason. Carcinomas in these
patients are likely to be more aggressive and to present at an
earlier age than healthy patients. Patients should be educated
regarding signs and symptoms of premalignant tumors, nonmelanoma
skin tumors, as well as the importance of sun
protection. This certainly is important in those with who are
treated for IBD, and particularly light-skinned patients with a
significant sun-exposure history who are on azathioprine."

P.S. how much, if anything, azathioprine really increases all kinds of cancer (skin cancer) is still debated and there is no real conclusion, but does it really matter when it comes to skin cancer? Better to protect your skin (it's an important organ of your ;-) ) and know about skin cancer - that will get your risk of getting into trouble significantly below the general population's risk. http://www.medscape.org/viewarticle/716862
 
I am ready to cry whenever I wash or brush my hair. So much falls out each time. I also feel like I am stuck inside hiding from the sun while everyone else is enjoying themselves. I have had my blood drawn every 2 weeks and now my WBC count is too low. I wish there was another med to use in place of the 6-mp but my GI says that they are all the same and likely to have similar side effects.
 
How long does it typically take (in the US) for the 6MMP and 6-TG tests to come back? It's been over a week now and we still haven't heard results...?
 
I am new to this and not sure how to put a "signature" in..sorry :) I tapered off prednisone a few weeks ago and am taking pentasa and 6-mp (150mg daily). Wasn't excited to start the 6-mp but had an abscess and my CRS and GI were afraid I would develop a fistula.
 
How long does it typically take (in the US) for the 6MMP and 6-TG tests to come back? It's been over a week now and we still haven't heard results...?
It took my first set of results about a week. I would call the office if you don't hear within a day or two.
 
I am new to this and not sure how to put a "signature" in..sorry :) I tapered off prednisone a few weeks ago and am taking pentasa and 6-mp (150mg daily). Wasn't excited to start the 6-mp but had an abscess and my CRS and GI were afraid I would develop a fistula.
I knew I read this somewhere. I think its on the drug info sheet in the box.


Combination therapy with Pentasa and azathioprine, or 6-mercaptopurine or thioguanine have in several studies shown a higher frequency of myelosuppressive effects, and an interaction seems to exist, however, the mechanism behind the interaction is not fully established. Regular monitoring of white blood cells is recommended and dosage regime of thiopurines should be adjusted accordingly.

heres the link
http://www.medicines.ie/medicine/5614/SPC/Pentasa+Prolonged+Release+Tablets+500mg/#INTERACTIONS
 
I'm taking 50mg of azathioprine. Today is my 7th day and I've had no symptoms yet. I bought factor 50 sun mist before I started, which kind of sucks for me because it's just started to get sunny in Scotland and we never get sun! :(
 
I started 50mg azathioprine in the last week and hope it works. I'll be moving up to 200mg if all the blood tests come out okay during the initial phases. I'm tapering budesonide and hope to stop taking it soon.
 
Hi I've just started Azathioprine 50mg. I'm finding the hair loss is affecting me already, but hopeful that it will work on IBD symptoms. I've also bought factor 50 sun cream.
 
I'm taking 50mg of azathioprine. Today is my 7th day and I've had no symptoms yet. I bought factor 50 sun mist before I started, which kind of sucks for me because it's just started to get sunny in Scotland and we never get sun! :(
Unless you have the fairest skin type out there, there really is no need for a sunblocker with a factor 50 ;-). Normal sun cream (factor 15 to 20) and not staying in the sun at a beach for 12 hours in the absolute worst heat should be enough to be on the safe side even while taking aza.

Hope azathioprin works out for you. As you started it only recently, be mindful that it can take up to 3-4 months to really kick in. Also always get your required blood tests (and ask for a copy, so you can check for yourself where things standard - you should aim for a white blood cell count between 4-5).

Lastly, the effective dosage of azathioprin is between 2 and 2.5mg per kg body weight, respectively 0.9 to 1.1mg per lbs. It's right that you start low at 50mg, but eventually it should go up to whereever it should be.
 

CarolinAlaska

Holding It Together
I am new to this and not sure how to put a "signature" in..sorry :) I tapered off prednisone a few weeks ago and am taking pentasa and 6-mp (150mg daily). Wasn't excited to start the 6-mp but had an abscess and my CRS and GI were afraid I would develop a fistula.
I don't think that is true that all the meds will do the same thing. The hairloss may be a shock reaction to the whole disease. We can hope about that... In that case it may all start growing back in about 3 months... How long have you had Crohn's?
 
Anyone up for some good news?

DS was started on Aza at a low 25/50mg alternating dose (he's 80 lbs & intermediate TPMT) and was at therapeutic levels at 5 weeks. I was shocked when I got the results. I was preparing for a long wait, maybe even another flare, so we're pretty excited around here.

His liver seems happy and he's had no side effects to speak of. On to monthly labs for awhile and then every three months. Looking forward to enjoying summer!

Hang in there everyone!
 
I've been taking 100mg of azathioprine daily and the numbers for my liver have been going up. Now I need a ultrasound for my liver.

Has anyone had to do this? Just curious what it could mean.

I must have been on it for a couple months now and don't know if the meds doing anything for me yet. Also on Humira

Another question. I see you guys talking about the sun and aza. is it bad to be in the sun a lot while on this med or something??
 

CrohnsChicago

Super Moderator
Liver damage is a known side effect of Imuran/Aza/6-MP and happens when your body is receiving too much of the medication (what your body considers a toxic dosage). This toxic dosage varies from person to person and depends on things like your weight, your dosage and how your own body decides to respond to treatment.

That is why your doctor routinely monitors your blood work. If they detect any potential risk to your liver or even your pancreas, they can adjust your medication by lowering it or changing it altogether.

Side effects may even reverse themselves after stopping these meds.

Sounds like your doc is on top of things getting your tests done and making sure you are well taken care of and don't suffer from any major side effects.

Hope everything works out for you Zac! Let us know when you get your results.

Also, this medication does put you at a slighly higer risk of skin cancer which is why it is recommended to take care of your skin while out in the sun by using sunscreen, being mindful of how much time you spend in the sun. Make sure to report any skin changes that you may see to your doctor.

http://www.drugs.com/sfx/azathioprine-side-effects.html

http://www.crohnsforum.com/wiki/Azathioprine


I've been taking 100mg of azathioprine daily and the numbers for my liver have been going up. Now I need a ultrasound for my liver.

Has anyone had to do this? Just curious what it could mean.

I must have been on it for a couple months now and don't know if the meds doing anything for me yet. Also on Humira

Another question. I see you guys talking about the sun and aza. is it bad to be in the sun a lot while on this med or something??
 
Hello All! I just wanted to introduce myself. I'm starting 6-mp tomorrow. Blood came back to the doc today. I'm sooooo ready to try a new treatment and I'm very, very optimistic about this drug. My uncle has been on Imuran for years for crohn's and my cousin was on 6-mp for UC, so I'm hoping, genetically speaking, I'll tolerate it well. I'm on 40 mgs of prednisone per day. Nothing less is keeping the inflammation down, and I desperately want to be able to get off the steroids.

Sadly, I had to kick myself out of the biologics club after becoming allergic to Remicade and having severe side effects from Humira. I'm looking forward to getting to know everyone in this group. :)

Isabelle
 

CarolinAlaska

Holding It Together
Welcome to the club, Isabelle. Optimistic is a great way to start! I think 6MP is a fairly gentle med, and hopefully it will work great for you. My daughter hasn't had any side effects yet, and has finally gotten into remission, we think. It takes 3-6 months to get the full effect. Sorry you've had a less than optimal experience with Remicade :(
 
Hi All, I have a question for you: I've been on 6-MP for 5 days and I'm having this sense of inner agitation, like my skin, muscles, and brain are all kind of vibrating. I'm also having waves of really intense fatigue, although they come and go. In addition, my stomach is really upset. For the last few days I felt a kind of burning in my chest and behind my ribs and my throat burned a little. It felt kind of like reflux but kind of not. Now, I'm feeling uncomfortable lower down, behind my belly button, almost like my intestines are moving around inside of me. It's not like the Crohn's pain I experience, it's different but still unpleasant and uncomfortable. Also, I feel emotionally vulnerable, maybe just because I'm uncomfortable, but I'm not sure. Just curious if other people have experienced side effects like this and if they go away?

I am concerned because the 6-MP I have contains two kinds of potato starch and I'm allergic to potatoes. It must be a tiny, tiny amount, but I've have problems with other pill fillers in the past. Today I'm going to see if the pharmacy can order from a different manufacturer with no potato, but I'm suspecting that the side effects I'm having are from the drug and not the inactive ingredients.

Thoughts?
 
Hi Isabelle, I have recently started in Azathioprine, I had reflux, nausea a slight general 'Flu' like feeling at first, and pains in ankles a couple of hours after taking each pill. Im on a small dose of 50mg though. The side effects are going less as time goes on, I'm on week 6 now, so hopefully as time progresses your symptoms will lessen too.
What time of day do you take your dose? Im just asking as I was advised to take my dose at night before going to sleep and I think this helps me as I am asleep when the side effects are most 'potent' but if I wake up in the night I can feel a bit sick (ive never vomited though) Sorry I can't advise about the potato starch, I don't know about that. Good luck x
 
Thank you CarolinAlaska! I have had symptoms since middle school and was diagnosed with IBS my freshman year in college. It has only been in the last year that I had finally convinced a doctor to do a colonoscopy to diagnose the issue. My youngest brother also has had symptoms for many years and had to beg his doctor to order a colonoscopy even after telling him that his father and sister have crohn's.
 
Thanks, Joonie. That is reassuring. I can deal with the side effects if I know they might not last... I, too, am only on 50 mgs but that dose is definitely doing something to me. Have you had symptom relief from the Aza? I've been taking my dose with dinner, but I'm thinking I'll switch it to bedtime. Maybe taking it without food will be better..? x
 
Hi Isabelle, yes taking with food is a good idea. If I've eaten a few hours before taking my pill I do have a little something else to eat. It's hard to tell if its having a effect yet as unfortunately I did have a big set back 2 weeks ago when I had to take antibiotics which I don't tolerate at all. I think there is a subtle improvement so far now I'm just getting over the anti biotic mini flare.
When I started taking the Aza though my gastro said it takes 6-12 weeks for them to work so I'm not worried yet!
 

CarolinAlaska

Holding It Together
Hi All, I have a question for you: I've been on 6-MP for 5 days and I'm having this sense of inner agitation, like my skin, muscles, and brain are all kind of vibrating. I'm also having waves of really intense fatigue, although they come and go. In addition, my stomach is really upset. For the last few days I felt a kind of burning in my chest and behind my ribs and my throat burned a little. It felt kind of like reflux but kind of not. Now, I'm feeling uncomfortable lower down, behind my belly button, almost like my intestines are moving around inside of me. It's not like the Crohn's pain I experience, it's different but still unpleasant and uncomfortable. Also, I feel emotionally vulnerable, maybe just because I'm uncomfortable, but I'm not sure. Just curious if other people have experienced side effects like this and if they go away?

I am concerned because the 6-MP I have contains two kinds of potato starch and I'm allergic to potatoes. It must be a tiny, tiny amount, but I've have problems with other pill fillers in the past. Today I'm going to see if the pharmacy can order from a different manufacturer with no potato, but I'm suspecting that the side effects I'm having are from the drug and not the inactive ingredients.

Thoughts?
I think it would be worth trying from a different manufacturer. My daughter gets several of those symptoms, but had them before her 6MP started, and not so much since she's been on it and her crohn's is more controlled. I wouldn't want to stick with it if those symptoms went on long-term...
 

CarolinAlaska

Holding It Together
Thank you CarolinAlaska! I have had symptoms since middle school and was diagnosed with IBS my freshman year in college. It has only been in the last year that I had finally convinced a doctor to do a colonoscopy to diagnose the issue. My youngest brother also has had symptoms for many years and had to beg his doctor to order a colonoscopy even after telling him that his father and sister have crohn's.
Heat, some docs are really naive/or is it just dumb?!
 
Joonie: Thank you. Good to know. I tend to eat dinner late anyway so maybe I'll just stick with taking it at dinner. So sorry to hear about your setback. Antibiotics are the worst, but, alas, sometimes ya need 'em... I've heard it takes 6-12 weeks, but my gastro was hopeful that I could at least start my prednisone taper after 4 weeks. This 6-MP is really making me feel strange, but I'm crossing my fingers and hoping maybe that's a good sign. Yesterday was rough but today feels a little better. Please keep me updated on your progress! Thank you for the insight and support :)
 
Its probably that mixed with the splitting pred dose, but I dont really care as long as something is working! And normally when I taper down pred I get bad again and this week I'm not so fingers crossed :)

Side effects mmmm I'm really tired but I was like that before anyway, so nothing really to report on that side of things just yet.
 
The fact that you've been able to lower your pred seems like a very good sign. Since starting 6-MP I've been able to stop smoking pot at night because the 6-MP makes me tired and I've been sleeping well (still taking the Trazadone too). But, yes, tired and wired from the drugs. I think the pred is finally starting to get to me. I feel really shaky and unsettled. I thought maybe the 6-MP was the culprit but it's not... I tried to taper down on the pred last week and took 15 mgs at dinner instead of 20 but it didn't go well... Can't wait for the 6-mp to kick in so I can get off this stuff :-(
 
Maybe you need to go back up to a higher dose again for a few weeks to give you a chance to recover :( do you have bad pred side effects? Is that why you dont like taking them? Shaky and unsettled sounds like the way I was last week when I got took into hospital, all sweaty and unable to concentrate too? Maybe you should get your heart rate checked, my consultant told me heart palpitations are a rare side effect of the pred.

Big hugs, hope you begin to feel a bit better soon. Wish I could help you more seeing as you helped me so much!!! xx
 
Sadly, patience is not one of my virtues. I went back up on the pred--to 40. Not sweaty but definitely unable to focus, heart racing especially for the first couple hours after each dose. The pred side effects hadn't been that bad the first month, but now they're getting bad. That's what happened last go around, also. Fine for a while, then BAM. Oh well. Hopefully it means I need less... Like you, I'm just waiting for the 6-mp to kick in. Trying to be patient. At least I'm not in pain. Thank you for the support and the hugs--that's all the help I need. (And knowing that the Aza is helping you gives me hope!!)
 
Got a call from my consultant, got an appointment with her Wednesday to check the progress of my bloods etc and hopefully go up to 125mg of Aza. Things are looking up for me finally :) touch wood!
 
Has anyone had any relief from food allergies as a result of being on Aza or 6-MP? It seems like, theoretically, if you're on a drug that suppresses your immune system, it would suppress your body's immune reaction to certain foods and the allergies that result from that...? Right? Maybe? I would love to one day eat dairy again!

Any long-time Aza or 6-MP users have any thoughts or experiences with this?

Thank you!

Isabelle
Crohn's
Fibro
Hashimoto's
50 mgs 6-MP
4 grains Nature-Throid
32.5 mgs of Pred and tapering down

Allergic to Remicade and Humira
 

CrohnsChicago

Super Moderator
Not sure about if it is the 6-MP....but every time I have been on steroids I have been freed of my lifelong sentence of seasonal allergies. They come back when I stop the steroids. I haven't been on 6-MP long enough to tell if it makes a difference or not in allergies in general as well.

Also Singulair, which is used for allergies and asthma, is an immunosuppressor and I that's what I typically take during allergy season even before crohn's came into the picture. So MAYBE all immunosuppressors in general (including Aza/6-MP) offer some level of relief from allergies of any sort?....Definitely possible but I would research that online a bit more and talk to some medical professionals before I say I'm 100% convinced though :p


Has anyone had any relief from food allergies as a result of being on Aza or 6-MP? It seems like, theoretically, if you're on a drug that suppresses your immune system, it would suppress your body's immune reaction to certain foods and the allergies that result from that...? Right? Maybe? I would love to one day eat dairy again!

Any long-time Aza or 6-MP users have any thoughts or experiences with this?

Thank you!

Isabelle
Crohn's
Fibro
Hashimoto's
50 mgs 6-MP
4 grains Nature-Throid
32.5 mgs of Pred and tapering down

Allergic to Remicade and Humira
 
Ooh got bad sunburn yesterday and I have my consultant tomorrow, hope she doesnt give me into trouble! Also I didnt have time to go get my bloods checked last week :( I work about 20 miles from my surgery so its hard for me to get there in time, and when I do, its too busy etc. Hope one week wont make too much of a difference in my aza getting put up/
 
CarolinAlaska: I overlooked your post to me from a few days ago, sorry just now responding. That's a really good idea...I did find that Par Pharmaceuticals makes a starch-free version (even called them to confirm). I'm going to finish of the meds I have now but have the pharmacy order the starch-free ones in the future. Also, I think I figured out that some of the side-effects I was attributing to the 6-MP are actually coming from the steroids. I've been on them long enough that they're turning on me, partly, I think, because the 6-mp is starting to work a little. i've been able to taper down from 40 to 30...I couldn't taper down even 5 mgs before.

CrohnsChicago: Thank your for your post. That makes logical sense to me as well. I tend to be much more allergic to everything when I'm flaring so maybe just getting my flare under control will help with some of the allergies. I've done online research and really haven't found anything. Will ask my doc next time I seem him. It's pretty secondary but I'm curious, optimistic, and I have way too much Prednisone energy right now!! :)

Aphrodite_X: Good luck tomorrow! Let us know how it goes! I've been hat and sunglasses girl lately knowing that 6-mp can make you photosensitive. The summer sun in rural Central New York is really sunny!
 
Argh I'm fuming!! Been taking too low a dose of aza for 5 weeks, should have been on 50mg twice a day! Now I need to go another 5 weeks before I can get my bloods checked again to go up to 125mg.

I'm such an idiot.
 
hi..I am bita.I am 32 years old.I have CD from 15 years ago.I am receive Azathioprine from 10 month ago.I like to be pregnant..but I am worry about Aza...my specialist dr advised me to continue it..but it is group D in pregnancy..I like to know women whom received aza in pregnancy..are their babies completely healthy?..what kind of anomaly or others treat my fetus if I will be pregnant with aza?(neural anomaly?IQ?cardiac anomaly?face anomaly as lip defect?or...)
 
Hello everyone, I am a mother to a son that has been diagnose with UC and we are looking for some support. He is 12 years old and is currently on azathioprine and cyproheptadine (this medicine is to enhance his appetite), the aza seems to be keeping everything under control (however I think its God who has everything under control); We are always open for advice on controlling flare ups.

God bless
BWNTB (Blessed While N The Battle)
 
Hello everyone, I am a mother to a son that has been diagnose with UC and we are looking for some support. He is 12 years old and is currently on azathioprine and cyproheptadine (this medicine is to enhance his appetite), the aza seems to be keeping everything under control (however I think its God who has everything under control); We are always open for advice on controlling flare ups.

God bless
BWNTB (Blessed While N The Battle)
My advice from 14 yrs of Crohn's and taking aza since 2003 (with a two year break) is that aza is helpful, but by itself cannot keep you in remission. With a bad diet, massive stress and not being relaxed, not doing sport anymore or taking vit D, vit B, magnesium, iron, zinc etc. supplements, I could fall out of remission quite quickly. I have been in good remission without really any symptoms or problems since early 2012. But I know from years before, despite taking aza, I had problems and flare ups every few months or so.

Having said it, I think aza contributes to my long term remission to some extent, but probably more important are all the other elements of long term management of Crohn's. I also intent to phase aza out again next year and see whether I can stay in long term remission without it.
 
Hi Ive been AZA since May and noticed the last 2 days when i get up My urine is red very red dont no what to do thinking it might pass
 

CrohnsChicago

Super Moderator
Hi Ive been AZA since May and noticed the last 2 days when i get up My urine is red very red dont no what to do thinking it might pass
What have you been eating lately? For example eating beets or drinking beet juice turns your urine red.

Here is an example of things that can cause red urine:
http://www.mayoclinic.com/health/urine-color/DS01026/DSECTION=causes

****It is also identified as a side effect of Imuran (azathioprine) which should be identified to your doctor IMMEDIATELY as it may need medical attention.
http://www.drugs.com/cons/imuran.html
Check with your doctor immediately if any of the following side effects occur:

More common
Black, tarry stools
bleeding gums
blood in the urine or stools
chest pain
cough or hoarseness
fever or chills
lower back or side pain
painful or difficult urination
pinpoint red spots on the skin
shortness of breath
sore throat
sores, ulcers, or white spots on the lips or in the mouth
swollen glands
unusual bleeding or bruising
unusual tiredness or weakness
Rare
Abdominal or stomach pain or tenderness
clay-colored stools
dark urine
decreased appetite
fast heartbeat
fever (sudden)
headaches
itching
loss of appetite
muscle or joint pain
nausea, vomiting, and diarrhea (severe)
redness or blisters on the skin
swelling of the feet or lower legs
unusual feeling of discomfort or illness (sudden)
yellow eyes or skin
Incidence not known
Abdominal or stomach cramps
diarrhea
difficulty with breathing
difficulty with moving
fat in the stool
general feeling of illness
pale skin
sores on the skin
sudden loss of weight
troubled breathing with movement
weight loss
 
Its definatley not beets not done anything different so maybe the AZA. I really want this to work tho :( really not good at the moment they put me on this to delay/avoid surgery as its 7 years since my last resection.
thanks for the advise
sandra
 
Please add me to the support group... Imuran in 2006... for 6 months... then off of it for 6 years... now back on it and PATIENTLY waiting for it to start working... even a glimmer of hope would be nice... going on 10 weeks or so now since I have started it.
 

CarolinAlaska

Holding It Together
Welcome, Michele and hi everyone. I hope you are all doing well and that your finding a good place with your medicine or your child's (if that be the case). Jaedyn is doing really well and gaining weight and getting stronger. Her doctor thinks she may be in remission now... Still little appetite, but maybe that is due to drinking so much formula...
 
Aphrodite_X: Did you up your Aza dose? How are you feeling?
Hi Isabelle!

How are you feeling these days?

Yeah I started taking 50mg twice daily from last Wednesday and I'm feeling pretty ok. Down to 25mg pred as well which the lowest I've managed to get since this flare up started 10 weeks ago so there is progress!

Think I jinxed myself before by saying I havent had any pred side effects - just the past week or so my face has blown up and the acne is en route :( never mind, 5 weeks to go before I come off these hopefully!!
 
I started on 50mg of imuran, got up to 200mg, but it wasn't connecting to the right pathway, so they have now put me on imuran 50mg along with 100mg allipurinol. All blood tests now indicate that the imuran is now working.
 
Hi Aphrodite_X, Wow, down to 25 mgs pred...that sounds amazing. So glad to hear the Aza is working. Big progress, definitely. Sorry to hear about the puffy face and acne. I got the chipmunk cheeks last go around, too. Ugh. I'm crossing my fingers for you for five more weeks!

I will have been on 6-mp for three weeks come Friday. I'm going for blood work on Friday also and will maybe/hopefully increase my dose when those results back. Hating the pred, of course, but I'm trying to be patient because, really, I don't have any other choice :-( But I think this 6-mp is helping a little. I feel better than I did.
 

Catherine

Moderator
Sarah coming to the end of her first week of 150mg aza. Starting to get nervous as she coming forward her longest time off pred since dx.
 

emmaaaargh

Moderator
Staff member
I'm so happy right now. It's been a year since I started on Aza, and it's been slow going, but my appetite is back and I've put on a stone and four pounds since January. I hope it continues!

I hope everyone else is doing well :D
 

CrohnsChicago

Super Moderator
Congrats emmaaaargh! I hope you continue to see progress and are able to achieve long-lasting remission :)

I'm so happy right now. It's been a year since I started on Aza, and it's been slow going, but my appetite is back and I've put on a stone and four pounds since January. I hope it continues!

I hope everyone else is doing well :D
 
Acne, swollen face and swollen tummy are really beginning to get to me. One of the cleaners in my work said to me yesterday 'are you sure you arent pregnant?!' NO!!!!! Weirdly its only in the afternoon my tummy swells out.

Only woke up in the night once last night though, which is progress!
 
emmaaaargh: That's wonderful news! So happy you are feeling so good and the Aza is working!! Please keep us updated! :)

Aphrodite_X: Hang in there. You're down to 25 mgs... Hopefully it won't be too long 'till you're done. My face is mooning out too. I find that it I forgo sugar and sweet stuff completely (even fruit) I have little bloating. But as soon as do, my belly bloats up. Don't know if that might help...
 
emmaaaargh: That's wonderful news! So happy you are feeling so good and the Aza is working!! Please keep us updated! :)

Aphrodite_X: Hang in there. You're down to 25 mgs... Hopefully it won't be too long 'till you're done. My face is mooning out too. I find that it I forgo sugar and sweet stuff completely (even fruit) I have little bloating. But as soon as do, my belly bloats up. Don't know if that might help...
Sugar and sweet stuff are the only things that give me any pleasure at the moment, so I'm not giving them up :lol: they dont hurt me, just make me fat for a few hours!
 
Aphrodite_X, you should take your pleasures where you find them... ;-) Believe me, I'd live on coffee ice cream if I could...
 
Aphrodite_X, you should take your pleasures where you find them... ;-) Believe me, I'd live on coffee ice cream if I could...
I'm just glad my major addiction right now is ice poles....they basically just ice! And its the only thing that stops me from wanting to be sick.

Sitting drinking a pint of milk just now, woke up with killer heartburn this morning, and a little bit of a migraine grrrr.
 
Good news: blood work came back great! Doc wants me to double my dose of 6-MP from 50 mgs to 100 mgs. Trying to decide whether to take the whole 100 mgs at bedtime, as I'd been doing with the 50, or to split the dose--50 mgs with lunch and 50 mgs at bedtime.

Any thoughts/advice?

Thank you,

Isabelle
100 mgs 6-MP
40 mgs prednisone (ugh)
4 grains nature-throid
 
Been on 6mp just over 6 months now at 100mg daily and have just tapered pred to 15mg, stay at 15 for 2 weeks the 15/10mg alternate days for 2 weeks before reducing to 10mg.
 

CrohnsChicago

Super Moderator
My suggestion would be to consult your GI since they have been working with you to develop a treatment plan that is suitable to your personal lifestyle and preferences and symptoms.

Personally I have been on 6-mp for 5 months. I have been off of pred for about 1 1/2 month and had my 6-mp adjusted from 75mg to 100mg with no side effects. I think what you are asking just technically depends on the person and how well you are tolerating the medication.

If your doc says you are doing well and wants you to up the dosage, I suspect the reason is that you are below the therapeutic dose of 6-mp...just like I was. Ask him why he wants to up your dosage, what your current levels are and, make sure you have a clear understanding now and what that means for you.


Good news: blood work came back great! Doc wants me to double my dose of 6-MP from 50 mgs to 100 mgs. Trying to decide whether to take the whole 100 mgs at bedtime, as I'd been doing with the 50, or to split the dose--50 mgs with lunch and 50 mgs at bedtime.

Any thoughts/advice?

Thank you,

Isabelle
100 mgs 6-MP
40 mgs prednisone (ugh)
4 grains nature-throid
 
I'm just glad my major addiction right now is ice poles....they basically just ice! And its the only thing that stops me from wanting to be sick.

Sitting drinking a pint of milk just now, woke up with killer heartburn this morning, and a little bit of a migraine grrrr.
Aphrodite,
when is the last time you had labs done. a swollen tummy isn't a usual side effect of pred. when you said it happens in the afternoon is it after you eat. is it normal for you to be feeling this sick or is it just since starting 6mp? be wary of pancreatitis. those are some of the signs
ju
 
You can still flare while on Azathioprine, right? What happens then? Does that mean you need to move on to another drug?

DS is 10 weeks in and at therapeutic levels already at a 25/50mg alternating dose, but he's showing symptoms again this week. Would they increase his dose even if he's therapeutic?

Labs tomorrow :(
 
They may increase his dose if they feel it will have a better effect at a higher dose!

You can certainly flare while on Aza. When I first started at 50mg (which was to be increased over time to 150mg) I had a bad flare after a few weeks so they decided to instantly start me on 150mg to get things under control quicker.

It also depends on how his body is responding to the Aza. I have had limited side effects with no issues on my blood work while on the Aza! Fingers crossed it stays that way!! Xx
Xx
 
Does anyone get these side effects from aza?

Feel as though I'm going to be sick constantly - not nausea as such, more like a massive lump in my throat. I am getting really really bad headaches as well!

Anyone? I was taking 100mg daily but my nurse told me to go down to 75mg daily to see if the side effects ease any and they have a bit but not much!
 
For my son he had a few side effects when he first started 6mp but as his body adjusted to it they went away. At one time he was on a very high dose (for him) and he started to get more side effects. Our GI told us that if you are feeling side effects it is likely your dose it too high. That was the case for my son. It takes a while to figure out what the right dose is for each individual person.

How long have you been on Aza?
 
On my 12th week now, have only been getting these symptoms for about 4 weeks so hopefully it will calm down and I can get back to as close to normality as possible. Glad to hear your son isnt having side effects so much now :)
 
how is everybody at taking their 6mp. i forget somedays to the point i had to set an alarm in my phone. i also have a candidia infection and stopped them for a few days till its cleared up. do you think theres any harm in it. i hvent read anywhere that you cant stop and start. are there any inplications i unaware of?
ju
 
6MP takes around twelve weeks to build up in your system. I know the instructions that come wits the prescription talk about taking it the same time each day, and to take it right away if you miss a dose, unless you at right at your next dosage time.

I don't think this is one you can skip for a week or so and expect to get right back to a place where it is effective - I think it needs to be constantly maintained for the effects to actually help. You might want to check with your GI.
 
Hi everyone, just joined.

Bumped up to 150 mg Imuran last Wed, took my last pred last night, so the taper is DONE (yay).

Looking forward to feeling well some time in the future......

PS- Thanks to everyone for sharing any and all information, it has helped me HUGE.
 
ShawnP - I am very happy that you are off Prednisone and I hope you are very successful on Imuran. It was a very effective drug for me in the past but now I am on its sister drug, 6mp, and this is also effective for me.

sickinlk - I agree with Ribo. I think you are supposed to take 6mp on a daily basis. However, please talk to your GI doctor if you have a question regarding this.
 
I changed doctors. The GI doctor who prescribed the Imuran moved her practice. I tried another GI doctor but I didn't like him and then the Imuran prescription ran out. I am now with a GI doctor that I like a lot but he prefers prescribing 6mp over Imuran. I am fine with that.
 
So.... the increased dose to 150 mg did not go well. Vomiting, itchy skin, headache, dizzy spells, loss of appetite, sore joints. Dr. pulled me off Imuran and off for more lab work to see what is going on. Not sure what the plan will be moving forward at this point. Frustration is building.......
 
Hang in there, Shawn. I know it's frustrating. We seem to do lot of waiting. Waiting for lab results, waiting for return phone calls, waiting for meds to work - or not. The GI didn't give any hints to what's next? Maybe 6MP or Remicade?
 
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CrohnsChicago

Super Moderator
I can't even seem to get my 6TGN levels into therapeutic range. I upped my dose and for some reason the 6TGN levels dropped even lower under the therapeutic level despite feeling like I am in remission the past 7 months with 6-mp. Waiting for my GI to call back with the results of my thiopurine metabolites test. My worst fear is that he will say I will need to add another medication or start a biologic soon since my 6MMP levels are near 4136 even though my 6TGN is 158

Out of curiosity Joshuaaa what is your 6TGN level? Is it on the lower end of the therapeutic range? Based on the info below I would assume the closer your 6TGN level is to the low-end of the therapeutic range and below, the more unlikely its effectiveness may be at preventing flares.


* Low 6-TGN is defined as <235 pmol/8 ×108 and high >450 pmol/8 ×108. High 6-MMP is defined as >5700 pmol/8 ×10

http://www.google.com/url?q=http://www.medscape.com/viewarticle/499922_3&sa=D&sntz=1&usg=AFQjCNEUxs_AoFEulswSKvVuD7jz4-oodQ

This chart was also provided in another thread and may help explain:

http://www.crohnsforum.com/showpost.php?p=674127&postcount=8
 
I was at 405 I think but still had a flare up (though I was in remission atleast clinically for a bit) just Tryna work out if I'm refractory to thioprine or not, iv since upped my dose to 125mg so I gotta go for another blood test today, maybe Aussie could chime in?
 

CrohnsChicago

Super Moderator
What were your symptoms? When was this flare?

I was at 405 I think but still had a flare up (though I was in remission atleast clinically for a bit) just Tryna work out if I'm refractory to thioprine or not, iv since upped my dose to 125mg so I gotta go for another blood test today, maybe Aussie could chime in?
 

Catherine

Moderator
Crohnschicago

I think Sarah is like you. Her first test show levels of 169 (6-TGN) and 298 (6-MMP), we increased her dose to 125mg, tested again 7 months later 18 (6-TGN) and 438 (6-MMP) increased again to 150mg aza.

Currently trying to get level higher enough to confirm shunting, then will add allopurinol. I believe Sarah is in a pred induced remission.
 
Hi Joshuaaa, TGN of 405 is a really good level. If you have been on your Imuran or 6MP for at least 3 or 4 months (some say 6 months) at the current dose, then you could be considered thiopurine-refractory if you are flaring due to inadequate maintenance medication (as opposed to flaring due to c. diff or other trigger).

Best wishes.
 

CrohnsChicago

Super Moderator
Yep. Very similar to my situation.

First dose of 6-MP was 75mg... 6-TGN of 180 and 6-MMP of 801
Upped dose to 100mg then tested again 3 months later (two weeks ago)...6-TGN 158 and 6-MMP 4136

Been playing phone tag with my GI for two days now. I never seem to be by the phone when he calls. Waiting for his opinion.

I suspect I may also be in a post-pred remission. I usually only last about 3 mos. off of pred without problems. But this last round of pred earlier this year was my longest run on the med so I think it is keeping me in remission for a bit longer. Been off of pred since sometime in May. Been on 6-mp since mid-February.

Catherine, Can you explain the shunting? I am not entirely familiar with that and how it relates to Imuran/Aza/6-MP. I have read that allopurinol is commonly used in situations such as the one that your daughter and I seem to find ourselves in. It really sucks and is overwhelming to have to add yet another medication to your treatment regiment but I guess if there's a possibility that I can help it is worth at least trying.

Wishing your daughter the best as you two try to figure this all out! :hug:

Crohnschicago

I think Sarah is like you. Her first test show levels of 169 (6-TGN) and 298 (6-MMP), we increased her dose to 125mg, tested again 7 months later 18 (6-TGN) and 438 (6-MMP) increased again to 150mg aza.

Currently trying to get level higher enough to confirm shunting, then will add allopurinol. I believe Sarah is in a pred induced remission.
 

Catherine

Moderator
This is my very basic understanding of shunting.

Shunting is where the body instead of making the good 6-TGN the body instead converts the 6MP/Aza to bad 6MMP.

Allopurinol is a medicine used to treat gout, one its side effects when use with 6MP/aza is that it increase 6-TGN level and reduces 6-MMP. So it shunts back to the 6-TGN.

When added Allopurinol the amount of 6MP/aza must be reduced and bloods must be watched very carefully as it can caused levels of 6MP/aza to rise very quickly.

In Sarah's case her levels are too low to know whether she is a shunter.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096137/
 

CrohnsChicago

Super Moderator
Thanks for that info Catherine :)

I finally spoke to my GI on the phone last night. He expressed his confusion regarding my numbers. He suggested we up my dose again from 100mg to 125mg and see what the lab work and symptoms look like in 3 months. We will try to decide what the next plan of action is then, if necessary.

I asked him if he suspected that the remnants of prednisone (which I have been off of since May) was keeping me in remission and he said it is more likely that whatever 6-mp HAS been properly broken down in my body is what has holding me over, but the current TGN levels just don't suggest that it is doing the full job it is supposed to do.

I honestly am not really sure what to think on it either, but if I can avoid adding a new treatment to my plan and avoid using biologics, I am willing to give this 6-mp another shot and see if it helps. Wish me luck!
 

CrohnsChicago

Super Moderator
When I got my last uppage I went three months without the test. I asked and he said that at the moment, no we are not doing the bi-weekly blood tests.

He feels that based on my initial TPMT results which were pretty good, I can go the three months without a blood test. Also I don't show any symptoms of a flare either physical or my other lab reports, if I do show anything it is more like signs of mild IBS which we are suspecting I also have.

If I do get concerned though I know I can call on him and he will listen to me.
 

Catherine

Moderator
Our Sarah's GI used do a lot less monitoring, then she become a "odd" case and she now getting advice from the author of this paper.:)

http://www.healio.com/gastroenterology/curbside-consultation/{67faf0e0-974c-4f86-a430-d735ef89a8d7}/how-do-you-monitor-patie

When and How to Monitor Patients on Azathioprine/6-Mercaptopurine

CBC and LFT

The frequency of measuring these routine bloods depends on the duration of immunomodulator therapy, as outlined in Table 9-1.

• How do you monitor CBC and LFT when starting therapy?

Leukopenia and hepatotoxicity most commonly, but not exclusively, occur soon after commencing thiopurines, or upon dose escalation. This means frequent blood monitoring is needed during the first 3 months of therapy. During the first 4 weeks, I recommend weekly CBC and LFT, followed by alternate weekly for the next 4 weeks, and then again at 12 weeks. This is a cautious approach aimed at detecting any leukopenia promptly and before infectious complications can occur. Thiopurine methyltransferase (TPMT) is an enzyme crucial to thiopurine metabolism, levels of which are approximately inversely proportional to the risk of developing leukopenia. If you are able to measure TPMT activity prior to commencing immunomodulator therapy and it is normal, then it is possible to reduce the frequency of initial testing to monthly, although routine bloods are definitely still necessary.

• How do you monitor CBC and LFT when changing immunomodulator dose?

At any stage during therapy, if the thiopurine dose is increased, you need to check a CBC 2 weeks later to check for leukopenia, while dose reductions do not require monitoring blood tests. It is not necessary to check LFT with each dose escalation unless patients develop symptoms suggestive of hepatotoxicity, such as nausea.

• How do you monitor CBC and LFT when patients are on a stable dose?

Leukopenia can occur at any time during thiopurine treatment. Therefore, CBC and LFT are required every 3 months for the duration of therapy. This is often overlooked, but one practical way of ensuring ongoing blood monitoring is to only give immunomodulator prescriptions for 3 months at a time.

• What CBC and LFT blood results do you aim for?

The aim of therapy is immunomodulation without immunosuppression, and I aim for a total white cell count of greater than 3.5 x 109/L with a lymphocyte count greater than 1.0 x 109/L, or occasionally slightly lower. Asymptomatic elevations of hepatic transaminases only require dose reduction once they reach more than twice the upper limit of normal.
 

Catherine

Moderator
The bloods are looking for Leukopenia which has developed a couple of times for Sarah. I not believe there are any symptoms you can look for.

Dusty my go to person on blood testing.
 
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