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Imuran/Azathioprine/6-MP Support Group

I joined this subgroup a few months back and now I can make it official, we belong here. My daughter is dropping Methotrexate and adding Imuran to her Humira & prednisone. Hoping this combo works better than the MTx & Humira did (which did nothing! ugh). It will be nice to give her a bit of a break of needles.

So I should prepare for her wanting to sleep more (than an average teenager? I am in so much trouble!) & hair loss? Anything else? Tips?

It would really be helpful if we had a subgroup of common combination therapy because I wonder about this combo in particular & things associated with it.
 
I joined this subgroup a few months back and now I can make it official, we belong here. My daughter is dropping Methotrexate and adding Imuran to her Humira & prednisone. Hoping this combo works better than the MTx & Humira did (which did nothing! ugh). It will be nice to give her a bit of a break of needles.

So I should prepare for her wanting to sleep more (than an average teenager? I am in so much trouble!) & hair loss? Anything else? Tips?

It would really be helpful if we had a subgroup of common combination therapy because I wonder about this combo in particular & things associated with it.
Hi there. I can't offer advice about combination therapy, because although my doctor wants me to do it, I've resisted. I just have experienced too many side effects from all the Crohn's meds to go that route. But what I wanted to say about sleeping more and hair loss from these meds is not to necessarily expect it, but be prepared in case it happens. It's tough to deal with it, but it seems you're very supportive (your user name on here even says so!), so that should help. Best of luck to her!
 
Thanks Arch- That is what I menat - preparation for potential issues for Imuran. Saves me the period where her or I freak out because of some new symptom. She was fortunate not to get any side effects from Mtx. I hope she is as lucky with Imuran. Prednisone is what seems to give her the worst side effects. That drug I can't wait to get rid of.
 
Thanks Arch- That is what I menat - preparation for potential issues for Imuran. Saves me the period where her or I freak out because of some new symptom. She was fortunate not to get any side effects from Mtx. I hope she is as lucky with Imuran. Prednisone is what seems to give her the worst side effects. That drug I can't wait to get rid of.
Amen on Prednisone! I'd probably rather take all of the other meds combined that take any more Prednisone. I'd take it as a good sign if she didn't have side effects from MTX, but at least you're aware of what could happen with Imuran.
 

theOcean

Moderator
I experienced hair loss when I was on Imuran, but it subsided eventually after about four/five months of being on it! Otherwise the first week or so I might warn for brainfog and a few other side-effects, but they should go away after that.
 
Hi! I'm on Humira and Imuran. I have had some hair loss, but I remedied losing so much every day by cutting it shorter. :tongue: I haven't had many side effects from the combo except for minor constant sinus issues--not infections, just annoying symptoms like chronic post-nasal drip and headaches, but I also have chronic migraine aside from Crohn's so that may contribute as well. Best of luck!
 
Hi again folks. I have another question regarding imuran side effects. I just started my 3rd week and now am taking 150 mg. in conjunction with cimzia. (I have been on cimzia for a year, so that hasn't changed). I saw my Gi on wed and mentioned a couple things that could be related to the meds.. First, I am extremely fatigued, though I'm not exactly sleeping great, but that isn't really new. Second, I've pretty much had a headache for the past several weeks. And, last, I've had some irregular heart beats and palpitations and my BP has been slightly elevated.
Well, long story short the doc didn't think they were side effects of the imuran as much as from the flare I'm currently suffering. He referred me to my PcP who did EKG and Xray which were normal. Now they want to do a echocardiogram and a halter monitor. If that doesn't show anything then they will probably concede that it's imuran side effects. (Or stress/anxiety, which I have boat loads of)
Has anyone else had these symptoms from either imuran or just plain old crohns?
 

theOcean

Moderator
I experienced fatigue and brainfog when I was first on Imuran -- that it's persisting is worrisome and may be something you want to get a blood test for. You may possibly be deficient in iron or B12 which may explain your fatigue as well, but otherwise the blood test may confirm if the Imuran is affecting you at all.

I would say it's likely the Imuran over Crohn's depending on your tests. It seems to me that a lot of people struggle with immunosuppressants.
 
Thanks theOcean. That's kinda what I think too. I've had CBC each the past two weeks that showed slightly low hemoglobin and hematocrit. My PCP ordered a bunch of blood work to search for any other possible causes, so I should have those results by Mon.
 
Thanks theOcean. That's kinda what I think too. I've had CBC each the past two weeks that showed slightly low hemoglobin and hematocrit. My PCP ordered a bunch of blood work to search for any other possible causes, so I should have those results by Mon.
Does a person have to fast for theCBC?

2
 
I'm on my third week with 200 mg imuran a week and now experiencing nauseousness and quite tired, but restless nights as well. No hair loss here.
 
I get severe migraines but only when I am not well. After my last op when I was in remission they went away. My GP is always concerned with my blood tests, but my GI says they are normal.
 
No, ronroush7, they didn't ask me to fast. I think they're more concerned about the specific blood counts, white and red blood cells, since they want to make sure the meds aren't causing a bone marrow issue. As well they are looking for signs of infection.
The new tests my doc ordered are more nutrition oriented along with thyroid, liver and kidney functions. Feel like a pin-cushion this week. :lol:
 

theOcean

Moderator
Thought I was going to get switched to Methotrexate, but it looks like my GI is switching me to 6mp instead since he says Imuran/6mp is better for fistulas. I'm assuming it has similar effects when starting it as Imuran since they're so similar?
 
Ocean, why to immunosupressives? Wouldnt you want different classes of meds like a biologic with an immunosuppresive? I just had a lengthy convo with our doc debating all this when adding Imuran.
 

theOcean

Moderator
I'm already on Humira, and was on Remicade/Imuran and Humira/Imuran before. So now I would be on Humira/6mp. My case is severe enough that I definitely need combination treatment, especially when dealing with my fistula! We're just trying to ensure it stays closed.
 
Sorry to change the subject.
My 15 year old started taking imuran along with her pentasa and antibiotics a few days ago and the fatigue and nausea have already started...how long do these side effects last?
Its most likely the Flagyl that was causing the nausea. Presumably she's finished that by now. It definitely needs to be taken with food. Nausea isn't as common with the other two, but it is still recommended to have Imuran with food (the evidence for it is conflicting). Having it with food will mean its less likely to irritate the lining of the stomach causing nausea.

Hope that helps
 
Hi again folks. I have another question regarding imuran side effects. I just started my 3rd week and now am taking 150 mg. in conjunction with cimzia. (I have been on cimzia for a year, so that hasn't changed). I saw my Gi on wed and mentioned a couple things that could be related to the meds.. First, I am extremely fatigued, though I'm not exactly sleeping great, but that isn't really new. Second, I've pretty much had a headache for the past several weeks. And, last, I've had some irregular heart beats and palpitations and my BP has been slightly elevated.
Well, long story short the doc didn't think they were side effects of the imuran as much as from the flare I'm currently suffering. He referred me to my PcP who did EKG and Xray which were normal. Now they want to do a echocardiogram and a halter monitor. If that doesn't show anything then they will probably concede that it's imuran side effects. (Or stress/anxiety, which I have boat loads of)
Has anyone else had these symptoms from either imuran or just plain old crohns?
I had experienced palpitations and a heart murmur during a bad UC flare prior to starting IMURAN (I was only on Pentasa at that stage). It is always good to get it checked out- but it is common for otherwise cardiovasularly fit and healthy young people to experience similar symptoms when their body is under stress- such as a flare of IBD. Anaemia as a result of IBD flare can further exacerbate the usually transient cardiac symptoms.

hope that helps
 
Hi, i know this is going to make me sound bad but any advise would be great..
I believe my consultant it going to put me on aza tomorrow and im concerned about the side effect but in particular the hair loss! I know there are others that i should be more worried about but since being on other drugs the thing that gets me down the most is how much my appearance has changed! Got a massive round face, hair growth, put on a lot of weight and have got horrible stretch marks! Im not sure i could cope with hair loss as well!
If this does happen am i able to come off it straight away or do you have to taper like the pred?
Also im a tpmt carrier? Does this increase my risks?
Sorry its so long and that i probably sound really vein:/ xx
Its not vein- its a valid concern. I've been on Azathioprine for 10 years now (wow I feel old), I still feel like I'm loosing hair all the time, but still have a full head of hair. I think we are more aware of hair loss.

I had the moon face and awful stretch marks from pred when I was switched to azathioprine. It is definitely worth the potential hair loss to get off pred. I can happily say that while I have had a few doses of pred in the last decade the azathioprine has meant it was not for very long- so no new stretch marks. Your GI will help get your dose right so that your side effects are minimised, but first aim is to get you into remission. Good luck x
 
Its most likely the Flagyl that was causing the nausea. Presumably she's finished that by now. It definitely needs to be taken with food. Nausea isn't as common with the other two, but it is still recommended to have Imuran with food (the evidence for it is conflicting). Having it with food will mean its less likely to irritate the lining of the stomach causing nausea.

Hope that helps
My pharmacy contacted the maker of Imuran yesterday and they advised to take 3 hours after food or 1 hour before, as with food the intake in the body reduces with up to 27%.
I will be taking it up with my GI tomorrow, as I am experiencing nausea.
 
Hi, I'm switching from methotrexate injections to azathioprine this weekend. I was originally on mezavant when diagnosed but was hospitalized twice for pancreatitis. I'm worried it will come back....and of course the fatigue and nausea, my work is busy enough right now it would be really hard to have to miss for being sick again. Reading all the comments I guess I will stick with my plan of taking it at dinner time, I've had nausea issues before. As for the appetite and weight, I'll be happy with loosing, I gained 40lbs in a month and half from prednisone, I've been off of it for over a year and I still can't get rid of it.

To the ladies out there, I'm switching from methotrexate so my husband and I can start trying to conceive, but I'm really confused with the research I've been doing. Some say it's ok and other say it causes deformities and other issues. Any ideas??


Thanks, Samantha
Hey Samantha

I'll give you my pharmacist response- Methotrexate is known to cause deformities, so I'm glad you're making the switch. The evidence for azathioprine is based on lots of women who have been taking it and conceived (particularly transplant patients) with no specific teratogenic effects (malformations) attributed to the medication. Within the medical community its widely accepted that the priority is keeping you healthy. If you are looked after, you are in a much better position to carry a healthy baby. So if you require medication to keep you in remission, azathioprine is definitely the safer option. You will need to consult with your doctor about optimal folic acid supplementation- recommendations vary.

As a woman this is an issue that has been plaguing me since diagnosis, and I have researched it extensively. I know I cannot maintain remission with out azathioprine, so I will be on it at the lowest effective dose through pregnancy.

Hope that helps.. and good luck :)
 
My pharmacy contacted the maker of Imuran yesterday and they advised to take 3 hours after food or 1 hour before, as with food the intake in the body reduces with up to 27%.
I will be taking it up with my GI tomorrow, as I am experiencing nausea.

All the different drug companies have different recommendations about whether you have it with or without food. its based on the initial trials. In Australia there is a blanket rule to have it with food, in New Zealand no recommendation regarding with/without food. I personally have never paid any attention to the recommendations because they're conflicting, but usually have it on an empty stomach when I remember.

With regard to it reducing absorption, the most important thing is consistency. if you always take medication with food your doctor can then adjust the dose to maintain your blood level of azathioprine. If it means you can stop feeling nauseous everyday its definitely worth talking to your GI. Don't do it without consultation though.
 
All the different drug companies have different recommendations about whether you have it with or without food. its based on the initial trials. In Australia there is a blanket rule to have it with food, in New Zealand no recommendation regarding with/without food. I personally have never paid any attention to the recommendations because they're conflicting, but usually have it on an empty stomach when I remember.

With regard to it reducing absorption, the most important thing is consistency. if you always take medication with food your doctor can then adjust the dose to maintain your blood level of azathioprine. If it means you can stop feeling nauseous everyday its definitely worth talking to your GI. Don't do it without consultation though.
Thank you Kiwigirl!
 
My pharmacy contacted the maker of Imuran yesterday and they advised to take 3 hours after food or 1 hour before, as with food the intake in the body reduces with up to 27%.
I will be taking it up with my GI tomorrow, as I am experiencing nausea.
Wow I had no idea. My kid just started imuran & is taking it with food. She hasn't had nausea but I need this drug to work the best it can. It's the last drug we have available so I want to give it all the help I can!
 
I heard this was only with milk/calcium though? Hmm.
In the Dutch prescription it actually says to take it with milk or water, while the Norwegian manufacturer advices not to take it with food or milk...

So ask your Gi and follow his advice.. I am going to ask today when I see my specialist.
 
I talked to my Gi today, and he wants me to follow manufactures orders and not take it with food, as he feels I need as much of it working in my body as possible.
But then my nausea never lasted longer than just the nights/mornings.
He said as well that I will have to stay on Imuran for life probably. :-(
 

theOcean

Moderator
I talked to my Gi today, and he wants me to follow manufactures orders and not take it with food, as he feels I need as much of it working in my body as possible.

But then my nausea never lasted longer than just the nights/mornings.

He said as well that I will have to stay on Imuran for life probably. :-(

Well, if you're on it for life maybe taking it with food is acceptable?

I used to take zantac or an anti-emetic a bit before taking medications that I knew caused nausea for me and it helped a lot.
 
Well, if you're on it for life maybe taking it with food is acceptable?

I used to take zantac or an anti-emetic a bit before taking medications that I knew caused nausea for me and it helped a lot.
Not yet anyway... he was very clear that my inflammation had been so severe that he wanted me to get most out of it.
I can talk to my GP tomorrow about practicalities in daily life.. as the GI was only happy that my tests had come back so clean.. and wasn't interested in any subsidiary stomach aches and other problems...
 
I have a question for anyone taking LDN as well as AZA/6MP. I got my blood work back today, and AZA has been called in to my pharmacy. I have been taking LDN for almost 2 years now, no major flares, just some chronic inflammation going on. My question is, has anyone had any experiences, good or bad, with taking both of these meds together? All suggestions or comments appreciated! Thanks:)
 
Upped to 100mg azathioprine, down to 10mg of Prednisone. Meeting with my GI Monday, hopefully will be able to add back in my Humira since my LFTs are almost normal. I'm on the azathioprine and Prednisone to try to treat my Autoimmune Hepatitis, and was taken off of Humira 8 weeks ago for gallbladder surgery (diagnosed with AIH 4 weeks ago). The combo isn't controlling my Crohn's whatsoever though. Dealing with tons of hair loss, easily bruising, and my skin not healing.
 
My worst fear of starting this medication is that I will lose a bunch of hair, as shallow as that may seem. It happened on Pentasa and Nexium, so I guess I am prone to that side effect. I don't know how long I will stay on it if that happens.I am so glad to have found this forum, to see what to expect for REAL people, as doctors always act like you probably won't have any problems.
 

theOcean

Moderator
Losing hair is a real thing to be upset about! So don't worry about feeling shallow for it. I got a tip Cat-a-Tonic to use biotin to help prevent hair loss. I'm about to switch to 6mp and bought some to see if it will help me.
 
Losing hair is a real thing to be upset about! So don't worry about feeling shallow for it. I got a tip Cat-a-Tonic to use biotin to help prevent hair loss. I'm about to switch to 6mp and bought some to see if it will help me.
I am taking something with Biotin and several other B vitamins already, just getting a head start on the potential for a problem :) Thanks for understanding!!!
 
My son's first GI told us the no food rule. We adhered to that rule very carefully for almost two years. When we moved his new GI said it wasn't necessary for him to take it on an empty stomach. Once we started to let him take his pill after eating his therapeutic levels went down. His levels are now sub therapeutic but he has stayed in remission.

I agree consistency is best. Have you tried taking it right before you go to sleep? My son's GI recommends this so you can sleep thru any nausea.
 
How is this working for you?
So far, so good. But it's not been quite a month yet for being on a full dose of Aza for my weight. I don't know for sure, but I feel like the anti-inflammatory effects of the Pentasa help support the Aza as my dose of Prednisolone goes down, as it can take a while for the Aza to start working.

Hoping that I'm working towards remission.
 

Maya142

Moderator
Staff member
Anyone have a metallic taste in their mouth with Imuran? My daughter has been complaining since going up to 75mg. She's only been on Imuran for a little over 2 weeks. Is there anything we can do for it?
We've tried splitting the dose and it didn't help.
 

theOcean

Moderator
Anyone have a metallic taste in their mouth with Imuran? My daughter has been complaining since going up to 75mg. She's only been on Imuran for a little over 2 weeks. Is there anything we can do for it?

We've tried splitting the dose and it didn't help.

I never had a metallic taste, no... maybe it's the brand?
 
People, I tried Imuran(azathioprine) with no difference. Can 6mp make any difference with my case? Do you have any idea, experience with situation like this?
 

Orchid

Banned
You can try taking the Aza with a meal instead of on it's own, that helps some people. There's also the option of trying 6-MP which has a less powerful nausea reaction for some.
 
do you guys think that biologics show better safety than immunosupressants ? it's really interesting ... I mean, the biologics are thought of as the "big guns", but if they are safer, why not always jump straight to humira/remi if possible ?
 
I haven't seen this research about biologics and cancer. Is this a new thing? Can you share a link?

I'm on Remicade and added 6MP a few months ago because the Remicade wasn't doing enough. I'm not seeing any difference yet, though not seeming any worse at least. I don't like the 6MP though. I got through the worst of the nausea, but still feel a little bit all the time.
 
Following appt yesterday heard the news we wanted to hear, 6MP not agreeing with ds. The fatigue is ruling his life and still in pain as well. Dr going to scope again (third time in two years) and then decide on treatment. Either stop meds completely and see what's happens, if there is no 'active' crohns, or start remicade if there is. We just want our boy back. Xxx
 
Earlier this month it was my one year anniversary with azathioprine, currently taking 200 mg. Some decent days, some bad days, and so on.
 
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Is anyone else taking 250mg of azathioprine as I've recently been in hospital and drs and nurses have been shocked on that amount I've been on it for over 2 years and had mostly bad days then good
 
I was doing fine all week. No dizziness nothing. Went to the GI dr Thursday they don't know yet if it's crohns or UC. I'm on 40mg of presdisone and they put me on antibiotics and 6mp while I wait for the Humira. Since I started taking the 6mp I been tired more again and dizzy. Is this normal??!
 

theOcean

Moderator
I found it never really mattered when during the day I took it, and I've been on both Imuran and 6mp now. When I was on Imuran I found it was persistent until my body got used to it, and then it went away. You can definitely try and see what it's like at different times of day, though.
 
I have been shy about posting my story, dont know exactly even why...
Jumping straight to these days, I am over a year with pred, having hard time to taper. Thats after the ugliest flareup about a year ago :(
My GI says its too long for steroids and we started the procdures to prepRe for 6mp. I am having hard time to accept it... on the other hand, I also cannot stand the thought of the further damage to my intestine caused by active inflammation.
Pred at high dose was not fun but currently on lower doses it agrees with me well and keeps Crohns at bay so I can run normal life ; if pred was a maintanance drug I would not hesitate to keep on it as it really helps.

So I started tests and examinations, next are the vaccines, and off we go ! I just have to be brave enough and try not look down.

My thoughts that keep running :
- Side effects : OMG ... from what to what-not. I am scared. Maybe its a part of me being ashamed about my disease ? (having said that, today I am much more open than I used to be about it, so it is some progress ...lol)
- Will it work at all ? I mean, pred works. But the mechanism of 6mp is different. I had a discussion with my GI and he was open to talk it through. I thought of jumping straight to biologics maybe ? I am trying to figure out which drug will have the best chance of working straight away with minimum side effects. While I see much more stories of success with biologics than with 6mp/imuran. Is it just a mis conception I have ? Do you feel differently ?
- Will it effect the chance of rhb104 combo (if approved) to work for me (there was such a study) ?
- Hesitant about all these vaccines; as somone who havent even been taking the flu shot, you could imagine
- I sometime feel much better being outside, under the sun. I realize that is going to be a problem now with 6mp. I wonder - do you put sun screen even for 10 minutes when you go to the grocery store etc. ?

I know it' all over th place... just put some if my thoughts that wont leave me. I should overcome my inhibitions and write my story in a dedicated post, so you can know me better.

Many thanks to you all !
 
oh and another thing - I saw there are genes tests sometimes done before 6mp - I wasnt given any. Are you familiar with them ?
If any of you can post all tests/doctors/vaccacines before starting 6mp it would be great.

Thank you so much guys for being here.
 
Is anyone else taking 250mg of azathioprine as I've recently been in hospital and drs and nurses have been shocked on that amount I've been on it for over 2 years and had mostly bad days then good
Hi Peter, the amount of azathioprine is dependant on your weight. normally 2 grams per kilo. But sometimes they prescribe more or less, and it depends on bloodtests as well, where they can see the saturation in your blood.

But science develops all the time, so it might be good to ask the dr why you are taking this amount. My specialist was good at explaining.
 
i got som bloodwork back this week, 6-tgn is in a good range (3,5), but me-MP is too high (123), hopefully a one off, otherwise I will have to stop/cut down on Imuran. Doing some more bloodtests in two weeks time.
Still nauseous in the night and morning, but OK, after I've eaten, so I can live with it.
Another doctors visit today, talking about going back to work and how to cope with all this going on in my body.

Did my back in as well, probably from sitting at home too much, and not being active.. but how to get active, when I'm so tired and exhausted? Vicious circle and fed up with it!!
 
I have been shy about posting my story, dont know exactly even why...
Jumping straight to these days, I am over a year with pred, having hard time to taper. Thats after the ugliest flareup about a year ago :(
My GI says its too long for steroids and we started the procdures to prepRe for 6mp. I am having hard time to accept it... on the other hand, I also cannot stand the thought of the further damage to my intestine caused by active inflammation.
Pred at high dose was not fun but currently on lower doses it agrees with me well and keeps Crohns at bay so I can run normal life ; if pred was a maintanance drug I would not hesitate to keep on it as it really helps.

So I started tests and examinations, next are the vaccines, and off we go ! I just have to be brave enough and try not look down.

My thoughts that keep running :
- Side effects : OMG ... from what to what-not. I am scared. Maybe its a part of me being ashamed about my disease ? (having said that, today I am much more open than I used to be about it, so it is some progress ...lol)
- Will it work at all ? I mean, pred works. But the mechanism of 6mp is different. I had a discussion with my GI and he was open to talk it through. I thought of jumping straight to biologics maybe ? I am trying to figure out which drug will have the best chance of working straight away with minimum side effects. While I see much more stories of success with biologics than with 6mp/imuran. Is it just a mis conception I have ? Do you feel differently ?
- Will it effect the chance of rhb104 combo (if approved) to work for me (there was such a study) ?
- Hesitant about all these vaccines; as somone who havent even been taking the flu shot, you could imagine
- I sometime feel much better being outside, under the sun. I realize that is going to be a problem now with 6mp. I wonder - do you put sun screen even for 10 minutes when you go to the grocery store etc. ?

I know it' all over th place... just put some if my thoughts that wont leave me. I should overcome my inhibitions and write my story in a dedicated post, so you can know me better.

Many thanks to you all !
I have only been on Azathioprine for a little over a week, so there are others far more experienced with it than myself. I just wanted to say that I have had NO side effects so far, and usually I am the worst about getting every side effect. I do not wear sunscreen for running to the grocery store, or even watering my plants, etc. I have never taken biologics, just short runs with Prednisone over the last 20 years, and Pentasa for a short time early on. I was just as worried as you are, and I know I am not out of the woods yet, but so far I am glad I went this route. Oh, I had the Prometheus test, and showed no genetic problem with me taking it, and it was good for my peace of mind. Keep us posted, and best of luck to you!
 
worriedboy, I have been on Imuran(aziothrioprine) for 2 months now, and besides some nouseousness in the night and morning (until I eat something)
No problems with sun, my specialist said the problem was only the repair if you get burned, so if you don't get burned, you should be alright, being an outside person, your skin is used to the sun.

I didn't like the vaccinations, but he, i don't like pain in my stomach, and I don't like the side effects from the dragon that prednison is either..
I did take the vaccinations that I could, only three were necessary, and only the pneumovax gave me side effects, the rest I hardly noticed where they put the needle.
These are vaccinations that most babies get today.. so you will survive it as well!

Prednison will take down your bone density and takes your immune down in another way. not healthy that either.. might make you an invalid before imuran could even attempt to ruin you..
 

Lady Organic

Moderator
Staff member
People, I tried Imuran(azathioprine) with no difference. Can 6mp make any difference with my case? Do you have any idea, experience with situation like this?
I was in remission with purinethol for several years. After deciding to stop it, I relapsed the year after. When I wanted to take purinethol again, the medication was OUT OF STOCK for a year in canada!!! So i tried IMURAN and no success. I had made some research and found that purinethol could be compounded in lab pharmacy during the shortage, so I insisted to my GI to try that route. My IBD pharmacist and GI were skeptical it would work since IMURAN just failed and both medications are pretty similar. But miraclelously, it worked and I maintained remission. So yeah, I had sucess with purinethol, but not with Imuran.
 
I was in remission with purinethol for several years. After deciding to stop it, I relapsed the year after. When I wanted to take purinethol again, the medication was OUT OF STOCK for a year in canada!!! So i tried IMURAN and no success. I had made some research and found that purinethol could be compounded in lab pharmacy during the shortage, so I insisted to my GI to try that route. My IBD pharmacist and GI were skeptical it would work since IMURAN just failed and both medications are pretty similar. But miraclelously, it worked and I maintained remission. So yeah, I had sucess with purinethol, but not with Imuran.
Thanks for sharing that Lady Organic. Good to know. Were you just on that? Or was it in addition to Remicade or Humira or something?
 
I was in remission with purinethol for several years. After deciding to stop it, I relapsed the year after. When I wanted to take purinethol again, the medication was OUT OF STOCK for a year in canada!!! So i tried IMURAN and no success. I had made some research and found that purinethol could be compounded in lab pharmacy during the shortage, so I insisted to my GI to try that route. My IBD pharmacist and GI were skeptical it would work since IMURAN just failed and both medications are pretty similar. But miraclelously, it worked and I maintained remission. So yeah, I had sucess with purinethol, but not with Imuran.
Interesting. Thank you.
 

Lady Organic

Moderator
Staff member
Thanks for sharing that Lady Organic. Good to know. Were you just on that? Or was it in addition to Remicade or Humira or something?
in 2004, I started at 50mg/day of purinethol alone. It helped for a few months then symptoms started again. We raised the dose at 75mg/day which then kept me 6 or 7 years in complete remission, living a life like I was perfectly healthy. in2012 after my relapse we started right away at 75mg/day but then blood works came back not good showing leucopenia and ''accumulation'' of puninethol in my body. (these tests were not really done with my previous GI so its possible I was on a too high dosage for several years). We decreased the dose at 50 mg/day. A few months after my GI still wanted me to decrease the dose at 25 mg/day. I was left with that for several months with my crohns still in remission. However during that year I developped a mild arthritis and when it was finally diagnosed we decided to change purinthetol for methotrexate, which has not helped for my arthritis unfortunately, but at least maintained my crohns remission. By the way, i have recto-colitis, ''UC-like'' crohns. hope that helps.
 

Lady Organic

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I am on my 11th day of 75mg 6-MP after determining the combination of Prednisone and Asacol is just not enough to keep my flares under control for longer periods of time.

***UPDATE***So far the only side effect I have noticed and feel I can link to 6MP is the fatigue that hits me in waves through the day. While I know I was fatiguged from being in a flare for a while, this heavy level of fatigue didn't exist until after I started the med. It's like I get a sudden urge to just pass out my eyelids get so heavy and my body starts winding down. I also think the combo of pred is what keeps me up late or waking up SUPER early some nights unable to get back to sleep.


I'm curious to know if anyone has any information/tips on hair styling for women with curly hair. I am certain the Asacol and disease itself over the past year is what has taken a toll on my hear thinning it out significantly to where wearing it curly is not really an option anymore. I am hoping the 6-MP does not add to this as I have heard some people mention hair loss as a result of taking this medication.

I occasionally straighten it, but I am looking into the option of wigs (extensions are just WAY out of my budget). Preferably something that is durable and can be worn by a physically active person...and of course looks reasonably natural.

***2/25/14 UPDATE*** Well a year later since starting this post and The hair thinning continued on my hair my eyebrows and my eyelashes. Each time my dosage was upped the hair thinning got worse to the point I could see bald spaces around the top of my head and it looked as if I was losing hair though not much was falling out.


It has been about two months since the dose change. I can say that my hair seems to be getting slightly better with this medication adjustment.!
Im sorry to ear about your hair loss, hopefully your situation is improuving at this point with medication change. Here are some of my tips to maintain optimal scalp health in the meantime. Avoiding direct sun rays on scalp which can burn the follicules is important. applying raw organic coconut oil on scalp may be beneficial when at home or before washing the hair. Its full of vitamins and nutrients that could be of a help to stimulate the hair follicules. I use coconut oil everyday as body moisturizer, it makes wonders for me (and smells good) and I never use anything else on my skin. I'd avoid using traditional shampoos with weird ingredients that can take away the natural moisture of the scalp. (some good shampoos with natural ingredients can be found in health stores) I'd definately forever stay away from hair extensions that pull and put extreme pressure on hair and increase hair loss. i know of some women who are caught in a vicious circle with hair extensions...

may I add, along with methotrexate, folic acid is prescribed to counter side effects such as hair loss. I had a bit of hair loss when debuting methotrexate and the rhuemy increased from 10 to 15 mg of folic acid per week. It may be a different process that cause the hair loss with different medication but maybe this is a avenue you could consider talking with your doctor... i know folic acid is often prescribed with sulfasalazine which may be similar to asacol, but Im not sure.
 
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I'd like to join this group. My son is newly diagnosed and is beginning 6MP today! Scared about what I have read so far but also hopeful it will help him. So many questions!
 
So frustrated and scared. Hoping you all can tell me if you've also experienced this with Azathiopurine? And if so does your doctor recommend discontinuing?

I've been taking now for 10 weeks and am on 150 mg. Since that time I've developed this cycle of hot flashes and chills. (I've been surgically menopausal for 13 years and take only estrogen for HRT and know what hot flashes feel like). This is so much more dramatic and frequent. I break out in a sweat and can't function. Then I'm freezing and wearing a sweatshirt in 75 degree weather. This happens 4-5 times per HOUR. (They used to come 2-3 times per DAY) I do not have a fever.

I also have bruises popping up on my legs with the slightest bump. The latest one measuring 3 inches in diameter to go along with the now fading one of 4 inches. And multiple other small ones.

Now my liver panel has come back with elevated enzymes twice the amount they should be. Hemoglobin,hematocrit, WBC, rbc, and neutrophils are all below normal. I am seeing a new specialist and don't yet know her routine well. Though she doesn't seem terribly concerned, she has run some other tests (blood and stool)I am awaiting results for now.

All this and I still have pain all the time (sometimes just bothersome others times very painful). Which seems not to have changed since adding the Aza. Bm's are still bad and still have blood sometimes too.

Is this drug the problem? If it's going to help and these symptoms are likely to go away I can try to stick it out. I know it takes time to work, but it seems the longer I take it the more side effects I have. I'm scared :(
 
Just got upped to 150mg azathioprine since my LFTs are elevating. The only wrinkle in the problem, is that my docs cannot tell if if is my Autoimmune Hepatitis rearing it's ugly head, or the azathioprine (which is supposed to control the AIH) causing my LFTs to go wonky, again. Testing out the 150mg dose, and if that doesn't control my LFTs, I will be forced to change meds again. Surprisingly, with this new regimen, my Crohn's is still in a major flare. I also have been told to increase my Humira from biweekly to weekly. I hate my body.
 
When I was tested recently, it was determined that there was too much Imuran in my system. I was only taking one tablet. Can there be bad consequences physically for having too much Imuran in your system?
 
When I was tested recently, it was determined that there was too much Imuran in my system. I was only taking one tablet. Can there be bad consequences physically for having too much Imuran in your system?
I am on 150mg a day. I am not sure how you can have too much, as they use very large doses for transplants. I wonder if it was something to with your blood count. Has your dose been dropped?
 
When I was tested recently, it was determined that there was too much Imuran in my system. I was only taking one tablet. Can there be bad consequences physically for having too much Imuran in your system?
Ronroush: I would think that it would be bad if it's building up. I'm hoping that all my symptoms are not that. Do you know what kind of test it was that they did to determine that it was building up in your system?
 
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