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Imuran experiences and info please

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Ulcerative Colitis
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Posted 8/1/2011 5:10 PM (GMT 0)
Hello all,

If any of you have any experience with Imuran to share, good or bad would be appreciated.  My daughter has been told she responds too slowly for Prednisone to do it's job and will be taking Imuran very soon.  As with anything else, we are a bit nervous to start something new as this will be a very long treatment, at least for years to come.  Thx

Posted 8/1/2011 5:28 PM (GMT 0)
I have been using 6mp for probably a year now and I haven't had too many side effects but I also haven't been so lucky with the treatment. I happen to be one of the small group of people who don't get much benefit out of the medication. There is a test they do after you start 6mp/Imuran that tells you whether your on the right dose and I've never been able to get the dose high enough to where I get benefit without harming my liver. I am not sure how helpful it is but I was able to taper off prednisone after starting 6mp. I am sure it will work well for your daughter. It's a very easy medication to take, you can take the tablet before bed to avoid any nausea that may occur. It's usually just one or 2 tablets.
Posted 8/1/2011 7:26 PM (GMT 0)
I started Imuran in October 2010.  I began having symptoms in August 2006 and was diagnosed with UC in Jan. 2007.  I tried many different drug therapies (always treating both orally and rectally) from Jan. 2007 - October 2010 but was never able to go into full remission.  In fact some of the medications I tried seemed to make my symptoms worse and not better.  I was constantly in a mild to moderate flare.  Prednisone helped only moderately and only helped while I was taking it but it never got me in remission. 

I switched physicians and after listening to my story and his first reccomendation was Imuran.  He believes Imuran is far less dangerous that prednisone (in particular for women).  My first physician never mentioned Imuran at all.  My only regret is that I stayed with my first physician so long even though he offered no hope for remission.  Imuran does take a few months to fully work.  I could tell a difference after about 6 weeks on Imuran.  I have been in a 100% full remission with Imuran since January.  I don't take anything else.  I am thrilled to be back to "normal" and to only take one medication.  I know Imuran does not work for everyone and that it is a personal choice as to what medications you use but I wanted to share a success story with you.  As a mom myself I can only imagine how difficult it would be to try to help a child navigate this disease.

Posted 8/1/2011 7:31 PM (GMT 0)
mama, I haven't used Imuran yet - but I'm so glad thatfield responded; and there are also others that have had wonderful results with it. Look for some old posts from MyUC - he's had wonderful health with it.
Posted 8/1/2011 10:54 PM (GMT 0)
  Hi, I just joined today and am sorry to here about your daughter.  I was diagnosed with UC about eight years ago.  I was put on Imuran after having the disease for about four years.  It takes it a while to build up in your system(about 2 or 3 months usually).  For the first couple of months I had periods of nausea that lasted about 1 to 2 hours everyday.  I would like to point out that I was being tapered off of Prednisone at the same time and I believe that's what was causing the nausea.  My doctor said that was not likely, but I think it was.  When I got off the Prednisone completely the nausea stopped.  My UC went into remission and stayed that way for about three years.  I had no other problems than that.  Other than having to have my blood tested every few months.  I hope this helps.  If you have any more questions please let me know.  I will be glad to help any way I can.
Posted 8/2/2011 10:19 AM (GMT 0)
I've been on Azathioprine (different brand then Imuran) for over a year now, I'd been on low doses of pred for what seemed like forever but was probably about 7 or 8 months. My GI was at that point keen to push on to the next level so Aza it was! How exciting right :-) At the start I definetly got the lethargy and nausea, but after a couple of weeks that was gone, I got off pred and its still working really well.

I know not everyone gets the same results but its been great for me. As we all do I guess we wait and see what happens next!
Hope things go well for your daughter.
Posted 8/2/2011 10:50 AM (GMT 0)
I used it for around a year before stopping. Had no side effects, but I also had no change in my symptoms.
Posted 8/2/2011 1:00 PM (GMT 0)
I'm on my second try with azathioprine, but still no significant results. I am up to 150 mg. Unfortunately, looks like I am on the 'does not help' side of it. No serious side effects so far.
Posted 8/2/2011 1:36 PM (GMT 0)
Oh I meant to say that I have not had any side effects at all from Imuran.
Posted 8/2/2011 3:53 PM (GMT 0)
Hi .. Ive been on it for around 2-3 years now, NO side affects but it doesnt seem to work for me. I am past the Max dose for my weight and still no sucess. I have read LOTS of sucess on Aza though so she may be one of the lucky ones!

Best of luck!
Posted 8/2/2011 5:02 PM (GMT 0)
It didn't seem to help me at all.
Posted 8/2/2011 7:52 PM (GMT 0)
I was put on Imuran in combination with Remicade after about the 2nd infusion because it wasn't working as well as expected. A lot of people seem to have good experiences with Imuran, but that is not my case. After I started it I started to get extremely ill. I couldn't keep foods down at all, I had a fever of 104, severe and constant stomach pain. When I was admitted to the hospital it was discovered that I had pancreatitis a rare side effect from this medication that happens in about 3% of patients. Just thought I would share so you get an accurate sample size!
Posted 8/2/2011 8:08 PM (GMT 0)
I tried it and all was well until about the 6 week mark. I started having significant fatigue, nausea and diarrhea. I stopped it and the next day all of my symptoms went away.

Miracle drug for some though. Good luck.
Posted 8/2/2011 9:18 PM (GMT 0)
Might as well chime in.

I had some side effects due to salofalk when I was diagnosed so my doc put me on Azathioprine. I think he kind of hop-step-jump medications in my case, which I wasn't happy about.
But on April 16, two weeks after starting, I had my first formed stool in two and a half months. Ever since I've been good. I was in remission not long after that.

But I'm concerned of the side effects. Does anyone on the board know what the ratio is in getting skin cancer or lymphoma? In my case I've talked with my doctor to see if I can go back on another 5ASA, while still being on imuran. I'm not stopping cold turkey because I want to see if I can take 5ASA's or not and prevent a flare up.

It's 50/50 with drugs. I think with your daughters age, you should consider something else. However, don't think that imuran can't help. You'll have to figure out the pros and cons first.
Posted 8/3/2011 1:42 AM (GMT 0)
Sibby, I don't know the numbers, but I've read people taking it for transplants, who are on much higher doses, have a higher risk of cancer than we would.

mama, I was taking 125mg of azathioprine for about 5 years, and just recently upped the dose to 150mg. I started it after Asacol wasn't doing the trick and it put me in remission. I stayed on the Asacol for a few weeks while the azathioprine kicked in (it takes a while). I don't get any side-effects (or so I believe). A few months ago I had to get glasses and the eye doctor said the aza could cause eye problems, but there are a lot of people in my family who need glasses, so who knows? I never felt fatigued or anything, and I started taking it when I was about 15, so around your daughter's age. She would have to get bloodwork done every few weeks, but it's not a big deal for me. It only takes a couple minutes and if they use a butterfly needle it doesn't really hurt. So I guess I'm one of the ones it works pretty well for.
Btw, in regards to my dosage being upped, since I moved in with my bf, I was forgetting to take it sometimes. So either I forgot too much and it stopped working as well, or 125mg ceased being enough.
Posted 8/3/2011 12:43 PM (GMT 0)
mama_blueyes:

It's been a while since I posted here.  I have been doing so well here that I haven't been checking in as much as I used to.  Whenever I see an Imuran question I chime in.  I have had UC for about 20+ years.  I have been on Prednisone for occasional flares, Asacol and have had mulitiple colonoscopies.  My colitis got worse not better.  All the time I had a very prominent GI in my area watch my colon just get worse.  All the time he kept telling me that my colitis was a mild case.  If you just looked at the pictures of the inside of my colon it looked like raw, bleeding hamburger meat.  However I trusted him and went along for the ride. 

Fast forward, my colits continued to spiral downward.  Eventually I went on Imuran after switching doctors and after going to a major metro teaching hospital.  The imuran has been great.  No side effects, one bowel movement every 1-2 days.  No bleeding, cramping, mucus or urgency.  I have been living life to the fullest lately going para sailing, zip lining, white water rafting, traveling, etc...  For now my colitis is a thing of the past.  At least bad colitis.  Meaning I know I have a chronic illness for life but my last flex, colonoscopy showed a 100% healed colon and no active colits anywhere.  I am so happy for that. 

I am not promoting Imuran for everyone.  I just wanted to share it has worked for me in all aspects.  My bloodwork has been spotless and I just feel better knowing that all is good from a histological and clinical perspective.  If you have any specfic question please feel free to ask.

MyUC

Posted 8/4/2011 7:33 AM (GMT 0)
I started aza back in March... at a dose of 75mg. I had been taking Salofalk (4g/daily) which eventually didn't do the job. Not sure if my body got used to the medication to a point where it wasn't doing its intended job, or what happened. Anyways... I was prednisone dependent, and aza has been a real help. I have recently had a relapse with my UC... due to my alcohol abuse; therefore, was increased to 150mg aza, and a quick stint of pred (20mg/10 days).
However, I believe had my alcohol abuse not came into the picture I would have no UC symptoms... I quit drinking for 3 months and my symptoms ceased to exist.

When I first started the drug I experienced a decent amount of nausea... to the point where I was throwing up in classes... As well as fatigue and lethargy; I found that exercising regularly really helped.

Everyone responds differently to the drug, and they base the dose on body weight... so your daughter will probably be on a low dose.

All the best to your future endeavors and I wish you the best of luck!
Posted 8/4/2011 2:08 PM (GMT 0)
My experience with Imuran was somewhat different than others, and probably kind of rare, but I'll mention it anyway. I was put on Imuran after a couple rounds of prednisone I couldn't really get off on. All was good, slowly went into remission, and it did help me taper off the pred. I noticed some hair loss and a little fatigue, nothing significant, but I did notice it.

After about 15 months on it, I had blood work done for something unrelated and my white blood cell count was really low--it is supposed to be between 4-10 and I was just under 3. My GI took me off it right away, as I guess I was at risk for a major infection(never had one though). He had me get blood work every week and my white blood cell count was very slow to go up, three months later it was barely at 4. Eventually he sent me to a hematologist/oncologist for a bone marrow aspiration to check for lymphoma, as a low white blood cell count can be an indicator of cancer. Luckily for me, I did not have lymphoma, but if of course shook me up and the mention of the word Imuran still kind of scares me.

So I did NOT have lymphoma, but the experience was not pleasant and I can't ever go back on Imuran nor try 6-MP due to my reaction. Apparently this was quite rare, but if your daughter goes on this drug, definitely insist on regular blood work in case something even remotely like this happens.

Besides my reaction, it kind of was working, which is a shame as now I am onto the biologic drugs and we all know what happens after that..

Anyway, good luck and I hope your daughter gets better. I feel for her being diagnosed at a young age, that has to be hard!
Posted 8/4/2011 3:04 PM (GMT 0)
Getting a low wbc is not that uncommon of a reaction as one might think.  The whole point of immuno-modulators is to dampen the immune system, basically to lower the gear it's in.  The trick is to find the right dosage.  I would be curious to know the dosage the previos poster was on when all of that happened.  Again I am no gi doc or hem/onc doctor but from what I understand it's not as uncommon as one would think.  Just saying.

For me personally I have had the blessing of my gi doc to lower my Imuran dosage twice.  I started at 200 mg, lowered it to 150 mg six months later and 8 months later lowered it to 100 mg with no negative effects on my colitis. 

MyUC

Posted 8/4/2011 4:05 PM (GMT 0)
I had a low WBC twice and I had to stop 6mp for a few weeks. Mine was a lot lower than 3... I had to see an oncologist/hematologist but my WBC went back up in about a month and I restarted the medication at a lower dose. There is a lot of trial and error in finding the right dose for each individual but most people do not deal with these problems to the extent that meredith and I describe. My count is normally around 5 - it's hard to supress that without going below "normal".

I am surprised how many people posting have had bad or no results. I am not convinced 6mp is helping me but it definitely helped me get off prednisone and I am very thankful for that! I was combining it with allopurinol because I couldn't get into the theraputic range and that contributed to my low WBC. This combination is known to cause drastic decrease in WBC. I know it helped while I was on allopurinol but without it, I am not in the range and I am not sure if it's doing anything. I think people on the board tend to be people who have had trouble. People who are stable take off...
Posted 8/4/2011 5:32 PM (GMT 0)
Anyone on Imuran should have lab work completed at least every 3 months. When you first start it you should have it done every few weeks. I never had any problems with finding the righ dose but my doctor started me a a low dose 50mg and worked me up to 150mg. I had blood work done every two weeks during that time to monitor how the increasing dose was affecting me. I now have lab work every three months. All my labs have been excellent - better than before I started Imuran. My doctor said the majority of patients do quite well on Imuran.
Posted 8/4/2011 5:57 PM (GMT 0)
I am not certain of the dose I was on when I took Imuran, I think it was on the low side, like 50 or 75mg. I recall that my liver enzymes were iffy or something which meant I only needed a lower dose, but I am fuzzy on those details, it was a couple years ago.

Notsosicklygirl, I think you are right that the experiences posted here don't necessarily reflect reality, I know when I am well, I am not on here too much..I am busy living life and enjoying being healthy! :)
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