# Long-term users of 6-mp or Azathioprine



## fenway1971

I've been on 50mg/day for 6 months now.  No real issues other than (a) fatigue and (b) my body's rejection of dosage above 50mg/day.

Anyone been on longer?  Side effects?  

I've been researching this drug and feeling a bit scared about being on it too long.


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## imisspopcorn

Hello,
I was on it for about 1 year before I had to have surgery. At one point I was on 150mg which was the highest dose possible for my weight. I didn't notice any weird side effects...I've been lucky in that I have tolerated everything quite well. (knock on wood :ybatty: )


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## shmooda

I was on 6MP years ago.  I loved the drug for the 1st year. It was the only med that worked.  After a year I got pancreatitis and bone marrow suppression. I was in the hospital for a week but all the bad side effects went away! It was actually worth the final side effects since I felt good for a year!


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## BWS1982

Almost been on it 2 years, now at a whopping 275 mg, as it's all being metabolized according to my test, and I've failed with low doses of it, and all other options out other than Tysabri and any brand new stuff like Ustekinumab and Vedolizumab...I was just about ready to have to have the colon removed.

I worry about the long term and high dosages of it w/ risks, but I also worry about dying on the operating table or feeling like a freak for the rest of my life with a bag of shite on my hip (sorry to be cynical, that's my own feeling towards a bag for me, not anyone else, as I can't know how anyone else feels inside, just myself).


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## bigtruck

been on 100 - 150mg of azathioprine for 7years now and nothing bad to report:voodoo:


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## Jefferson

Like bigtruck, I've been on 6MP for many years, 9 to be exact. No issues other then fatigue here and there. My highest dose was 150 and am currently on 75mg


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## braveheart

I have been 6-mp for long time, and I think this is the best drug to treat this disease.

Do not worry about side efects, just make regular blood test to see how is everithing goes well.


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## Jeff D.

I've been on 6-mp for a year and before a one year break I was on it for about 4 years.  No real side effects and no real help either.  The reason I'm on it now is that it should help reduce the chance of building antibodies to cimzia like I did with Remicade.


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## fenway1971

Thanks all for the posts!  Glad to hear many of you have been long-term users with few side effects.


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## maria27

hi i've been on it for years, 75 mg, no problems


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## becmilf

Hey Fenway,
I'd been taking 100mg of Imuran (azathioprine) continuously since 2002, and my doc recently upped it to 125mg. No side effects at all, but the doc always warns me that it's super-important to get my blood checked regularly, I guess so they can spot any problems before they get out of hand.

Hope that helps!


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## Wizbit

I was on azathioprine for 4 weeks, starting in October at 25mg/day and increasing to 50mg/day after the first week, then 100mg/day the second week before a final increase to 150mg/day.

I had weekly blood tests to check for any side effects. After a few weeks they noticed my blood platelet level had dropped, but was asked to carry on in the hope that my body would recover. After another blood test, my platelets had dropped to a very low level (12) so was advised to stop taking the azathioprine.

After a further month (off the azathioprine) I developed two big, ugly, black bruises on the back of my right thigh, so I had another blood test that showed that my platelet count had dropped further to a dangerous level (3!)
So I had to go back to hospital and have a bone marrow biopsy to see if my body was either not producing enough platelets or making a normal amount in the marrow - but being destroyed while in my bloodstream. Fortunately, it turned out to be the latter, so they just gave me a(nother) dose of Prednisolone. Turns out that my over-active immune system is wiping the platelets out so that they can't build up again...

As a side note, the bone marrow biopsy was the most horrific procedure I've ever had to endure. Even though I had a local anaesthetic applied, the pain was worse than anything I've ever experienced in my life. It's been three days since having it done and my back still aches and moving around is still painful. If I'm ever asked to have it done again, then they are going to have to knock me out beforehand!


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## CrohnsHobo

I was on 6MP for about 10 years. No problems, worked well for awhile . . . then nothing.


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## katfisher

I have been on 6-MP since I was diagnosed in 2005. At first I was on 50mg/day and now am up to 100mg/day. It has been working well for me with no noticeable side effects. I do have monthly blood tests which can be costly and annoying but it's worth it to make sure my white blood cell counts are normal and my liver is not deteriorating.
I just found out today that I will be adding Humira or Remicade as a new medication. Not sure which one I will choose yet. I assume that I will stay on the 6-MP as well, at least for a while, though it's not doing the job alone currently.


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## Tan

So 6mp can cause fatigue might be the reason why Im so tired at the moment?? Although I will still get the doctors to check my B12 levels. I have only been on 6mp for 3 weeks just up the dosage to 50mg last wed and since then have not been feeling great.. am extremely tired can't seem to get enough sleep (where as before I was having trouble sleeping) also not sure if Im having a flare at the moment cause having more frequent BM and have nausea all the time at the moment. Also lost my appetite and starting to get pain in my right side of my abdo. Not happy Jan!!!
Im not too concerned about side effects as long as the drug works and helps me stay in remission which Im not sure its doing its job at the moment, but then again I could be reacting to the increased dosage I am only tiny just under 50kg or 110 pounds so maybe 50mg is too much??


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## Peaches

Tan - you are making me remember when I was on 6MP - over 5 years ago - so kinda fuzzy, but.  They took me off of it because I was complaining of lethargy and feeling "crohnsie" all the time.  I thought for sure I was flaring because, while I didn't have the usual pain I associate with a flare - I was having chronic diarrhea.  They did a scope to see if I had active disease and my colon looked *great* - but I felt like CRUD!!  I was super fatigued, practically couldn't function.   I can't remember now if my bloodwork was out of whack and if that was the reason they took me off, or if it was because of the lethargy.  Anyway - just thought I'd share that as it may be similar to what you are going through.


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## fenway1971

Tan,
Do you take your 6-mp religiously?  I only ask because I forgot to pack my meds when I drove up for Xmas.  Missed two days of meds and wow! was I fatigued and grumpy.


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## mwb3779

I'm on a 100 mg a day.  I feel totally fatigued most of the time.  Except for just a little after I tak my pred.  Weird.

Hey Fen, from my understanding, your body builds up the 6mp.  Maybe you are on too much?


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## Tan

Fen - no haven't forgotten to take any I take it every morning when I first wake up. I had been feeling great on 25mg for 2 weeks my GI had called me on Xmas Eve to see how I was doing before he went on holiday and I said great no issues to report! I think I might have jinxed myself.. ha..ha.. Anyway only been on 50mg for just under a week now so maybe thats it. I was on antibotics as well so the doc has switched me to one that is better on my gut so if that doesn't seem to help will look at reducing my 6mp dosage back down.

Peaches - oh that is interesting I wonder if anyone else has had similar experiences. I know on the imuran I had a bit of nausea and increase in BM and slight pain, my blood work came back with high levels so they took me off it and put me on 6mp but last time is nothing like Im experiencing now.


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## ErinDF

I was on 6MP for a decade, about 100 mg (I think).  I had no side effects that I could trace to the 6MP...though I did get sick a lot which I always blamed on inmunosuppression (when I say sick, I mean colds/flu/bronchitis type things).  Only reason I came off it was because it stopped working!

Erin


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## wqcoleman

I was on it 11 years before I had a pancreatitis attack this year and then went off of it.  It helped at first, but all drugs now don't work.  I'm glad i'm off it, since it increases cancer risks long term (+35%), which freaks me out.


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## ChronsSUCKS

Been on it for 7 years or so and its very effective for my crohn. Does have a little sideeffects like fatigue but its outweighed by benefits.


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## kenny

If so many people can take this stuff than what am I so afraid of. I am sitting here after taking my first dose of 175mg and waiting for my head to explode or something. Maybe I shouldn't have watched another X-men movie tonight. 

The pharmacist told me to take good care of my mouth. Brush as often as I want to and use plenty of mouthwash. He said people often have issues with infections in the mouth at first because so much bacteria is there. 

That really the case? Any other advice?


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## shazamataz

Definately do something to take your mind off things Kenny! I totally understand your waiting for something bad to happen, but I think you can THINK yourself into it!


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## Peggy

My hubby has been on 150mg a day for about 20years, latley he has been unwell so the GI Doc has said to stop it and they will try him on a low dose cancer drug I cant remember the name of it. He is to start in about 2 weeks time if all goes well. Up until now he has been good on this dose with prednisolone 10 15mg a day, Peggy


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## can1991

I have been on Imuran since 1988, 20 + years(Auto Immune Hepatitis) ! Since being diagnosed with Crohns (May 2009),I have had my dosage increased from 50 mg to 150 mg. If I forget to take it, I experience a headache. Otherwise, I am doing great on it. No increase of colds, flu, infection... The increased dosage seems to be helping the crohns.


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## mharvey90

I'm on 150mg/day and I only weigh 130-140 pounds. Haven't noticed much of a difference because I've been flaring on and off for nearly a year now, and have been taking it since I started flaring


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## crazycanuck

I am not a long term user but I'm on 200mg/d and weigh 150 pounds. I have noticed more colds so far but maybe its just conicidence. I started Imuran 2 and a bit months ago now. Had tummy aches at first but all settled down now and feel pretty good.


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## kenny

I am finishing off my first week now. Jumped right in at 175mg/d weighing 165lbs. 

Today I feel as good as I have ever felt. I have not had any ill feelings I can attribute to the drug except maybe a touch of blurry vision. The computer screen is a bit fuzzy and hard to look at sometimes and I don't recall that from before. Also I am having to do 2x as much corrections to everything I try and post. My arthritis pains have wained although that cycles all the time anyway so I wont get excited about it yet. 

I had a blood test done at the GI clinic when I was given the prescription and told to hold on starting it until they checked something. So I suspect they screened me that enzyme complication thing.


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## acg101

*6mp imuran*

I have been on it 10 years no proble, started on 50mg now 175 going back to 100mg. it really takes 4 to 6 weeks for it to kick in. Now on Cimzia with good results. One should take regular bloods (ESR and CBC) to make sure its all ok. avoid contact with sick people (no jospital visits)


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## kittykat92

ive been on 75mg for teh past year seeing im only small (99 pounds) and im 17 the doctor doesnt want to increase my dosage anymore (which i think is a good idea) though i still have heaps of hospital stays. I didnt know fatigue was a side effect! that actually answers heaps- I get so tired during the day and just want to sleep:lol: my mum gets so worried so that might make her feel a bit better


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## GlennF

I am having to decide between two meds: either 6MP or Humira.  I feel like Humira is the last resort but I need advise on which one is more preferred. I am only 18 and I just recently had surgery to remove some colon and small intestine in December.  My Crohn's specialist says I have a 50% chance of a reoccurrence in the next 5 years.  But if I take a medicine the percentage is greatly reduced.  I am very confused on which medicine to choose.


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## TheyCallMeRC

Bumping this to give an update..... Finally got to see my new GI today and he started me on 6-MP (100mg day) and I have a colonoscopy next Tuesday and he wants to do an upper GI and small bowel follow through (not sure why he wants to do a SBFT after the colonoscopy but he's the doctor). This is my first try with 6-MP after two years of Cimzia and no luck. I need to get my crohns in remission so my fistulas will heal. Will keep updated as to how it helps or not. He said it takes about 3 weeks and I will be tapered of this round of prednisone so I should know if it's working or not.....


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## Tenacity

I believe it takes longer than 3 weeks to be effective. I would research that. I'm typing this on my cell - or I would have done it for you. 

Have u ever tried Remicade - or just Cimzia in the past?


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## TheyCallMeRC

Tenacity said:


> I believe it takes longer than 3 weeks to be effective. I would research that. I'm typing this on my cell - or I would have done it for you.
> 
> Have u ever tried Remicade - or just Cimzia in the past?


I tried Remicade for I think 3 infusions. After the 3rd one I started having a tightness feeling in my chest and the dr. stopped completely. Then my last GI said that he wasnt going to try Humara because if Remicade didn't work then neither would that. i told him we didnt really get to try it and all that but I have heard otherwise from crohns patients and it did work after Remicade. Right now we are trying the 6-MP and if that doesn't work then I will try to push for it again.


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## Sadiesweeet

This forum has really made me feel a lot better about being started on this medication! I'm currently taking anti-biotics for my abscess and on the elemental for another two weeks to calm my flare down. My doc has said although i feel fine he wants to start me on Azathioprine long term (not sure what dose yet) as soon as my abscess has gone as my Crohns is quite severe. 

I was daunted at first about taking medication long-term and the possible risks to disease etc but most people are saying they have very few side effects other than fatigue? 
I have always had fatigue any was as i am anaemic so have vit B12 injections regularly. 

I'm sort of hoping although this drug is long term it will help me on my way to leading a normal life with crohns.


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## smp209

This makes me feel a little better. I've been on 6mp for about 14 years now, and have been in remission for about 10. (I was diagnosed at 7, will be turning 26 this month) I've been getting uneasy about being on such a serious med for so long. Especially as I hope to have children someday, I don't want to be on a medicine that could harm my future children. Are there any significant effects that come from being on it for so long?

On a random note, does anyone know if 6mp/Crohn's can cause eczema?


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## Steveyank

Hi. I just started 6mp today, 100mg. Just wondering how long it take for side effects to appear if they are going to. I Am also on entyvio for 4 months.


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## mtngrl55

Hi!  Thanks for all of the info here.  I have just been on entocort with no results and increasing side effects, so am finally ready to go back to 6-MP.   It worked for me for three years but I went off of it because the nausea started to get really bad.  That was 10 years ago.  Since the 6-MP I have had minor flares and used Aza for one, it worked great but my liver enzymes skyrocketed.  I was already in remission after ony 3 months of it.  I wish I could use it again.  I've been researching cannabis vs 6-MP  and while I like that cannabis has less side effects, I want to achieve remission again.  I have been Mostly concerned by the risk of lymphoma but I've found that I'm not in the high risk age or gender so will try it again, this time using nabalone for the nausea.


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## Jennifer

Steveyank said:


> Hi. I just started 6mp today, 100mg. Just wondering how long it take for side effects to appear if they are going to. I Am also on entyvio for 4 months.


This is a really old post but I'm going to reply anyway in case anyone else wants to know. I've seen people mention on the forum seeing side effects within a few days of taking it but those were more extreme reactions. It really depends on the person (few days to months). Personally I've never noticed any significant side effects from it and I've been on it for over 15 years. 100mg may be too high for you if you have significant side effects Steveyank. Again sorry for the late reply, I just now saw this post. 



mtngrl55 said:


> Hi!  Thanks for all of the info here.  I have just been on entocort with no results and increasing side effects, so am finally ready to go back to 6-MP.   It worked for me for three years but I went off of it because the nausea started to get really bad.  That was 10 years ago.  Since the 6-MP I have had minor flares and used Aza for one, it worked great but my liver enzymes skyrocketed.  I was already in remission after ony 3 months of it.  I wish I could use it again.  I've been researching cannabis vs 6-MP  and while I like that cannabis has less side effects, I want to achieve remission again.  I have been Mostly concerned by the risk of lymphoma but I've found that I'm not in the high risk age or gender so will try it again, this time using nabalone for the nausea.


What dose were you taking mtngrl55? I wonder if maybe the dose for you was a little high. Also if your liver enzymes went up then you could talk to your doctor about trying a low dose of 6MP with Allopurinol. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/ Good luck!


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## mtngrl55

Thanks Jennifer.  I see my Dr this week and will find out then what he has planned but will remember allopurinol if needed.


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## smp209

Hi all, 

I've been on 6MP for nearly 18 years, last flare was 12 years ago. My previous GI was adamant about me staying on it, saying that if I got off I would have a flare. I recently found a new GI who really listens to my concerns and questions instead of just shooting them down. The second he heard how long I had been on 6MP he recommended that I go off. He said that the longer you're on 6MP the greater your risk for things like lymphoma. He said he has taken several patients off of it, some of whom are now on no medication at all. I would love to go off of it, as I have been concerned about the potential side effects for a long time. 

I'm just wondering if anyone on here has ever gone off of 6MP and how it went for you?


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## ronroush7

I am on the same dosage as you.  I was on a higher dosage but then they said there was too much in my blood.  I believe my hair has thinned out some from it.


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## samman

smp209, So if he took you off of it did you get any problems? Also how long have you been off of it. I was planning on taking it for a while then stopping for a while and asking my doctor if that is a possibility. Supposedly cancer risks increase as well if you keep crohns active too...


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## smp209

Hi Samman. I haven't gone off of it just yet, he wants to do some tests to see if there is any inflammation/disease still in my intestine first. That will help determine if I go off it or not. I was hoping to hear from others who had gone off of 6MP, because I've been on so long that I'm nervous to get off of it.


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## jfrahill

For those on 6MP -  I found out I had Crohn's after my first surgery (they thought it was Colitis) in '95.  I was on 6MP for ~~ 10-12 yrs., only needed 50mg daily. Had blood work checked monthly for signs of problems with my liver. The longer you are on 6MP the higher your risk for lymphoma. 

 Three + years ago I started weaning myself off of 6MP. I succeeded. The only thing I take now is Imodium to slow my system down (have high metabolism), and I eat very healthy.  Eggs/yogurt for breakfast, salads for lunch, steak/fish for dinner. lots of fruits & veggies.

 They detected I had Crohn's when I was 40, I'm now 63, I hope to work another 10 years, and I won't stop learning, growing, knowing, until well into my 80's.


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## smp209

jfrahill your post was so wonderful to read! I'm so happy to hear of someone who has been able to go off of 6MP successfully. I too eat very healthy and workout daily, so I think that will help me go off of it. I just had some tests that show I don't have any inflammation, so I should be hearing from my doctor today to discuss it further. 

Thank you so much for responding!


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## jfrahill

smp209 - never doubt what you can do. Part of any healing process is the patient believing in themselves & the path they are on. My journey is not over by a long shot.  I have two daughters who get colonoscopies every year, not just for Crohn's, but my ex (an ex for very different reasons), has FAP (familial adenoma polyposis) and just recently had what's called a Full Whipple procedure - part of her duodenum & pancreas removed - near stage 4 cancer. So keep it positive. Working out...I changed from running to walking 30 minutes a day after work. I still get eh physical & mental benefits. Let me know how it goes, and know you've got someone in your corner.


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## mom5272

I've been on 6MP for almost 20 years.. always done great on it but now i'm having major skin problems...warts, keratosis, brown spots..spreading like wildfire. I'm so upset because this has been a miracle drug for me and now i'm afraid of developing skin cancer. Seeing a new GI DR this Friday...


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## CrawlThenWalk

Like mom5272 I also have developed a lot of flat warts, keratosis and skin tags. I have been on Imuran for 22 years. I have tapered down to 50mg daily from starting dosage of 150mg. I was diagnosed with Darier's disease earlier this year, which is a rare skin condition. I also have Rosacea. I've speculated that these conditions are either related to my Crohn's, Imuran, or both. I probably will never really know. I have traveled the world to surf and have spent a good bit of time in the sun. I'm sure that wasn't too helpful. Anyway, I've been in remission for 18 years. I've had out of range liver enzymes on blood tests due to Imuran. I elected to say on Imuran because my quality of life is VASTLY improved. Even if the Imuran shortens my life in some way, I'm living a high quality life for many years. Long term use - It's a risk/benefit analysis that is unique to each person's disease experience.


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