Fallout from imuran

[kjhngisd]

fallout from imuran

hi there!
My wife is the crohn's sufferer. Her doc started her on imuran about 3-4 weeks ago.
The first week and a half were ok -- no real issues.
Then she started having swelling on her right side, bloating and nausea. Since it had been so long and other things were going on, we thought it was related to monthly cycles or bad eating or stress or something.

3 days later, it had gotten worse. She stopped imuran, called off from work, and called the doc.
After a day or two of phone tag, while the doc was out playing golf or something, she finally got ahold of his assistant and said we were concerned that she may have pancreatitus. She was already going for daily blood tests so the nurse said the doc would get the latest results on Monday (was Friday when we spoke) and he'd review them and get back.

After reviewing, he asked my wife to come in to the office Wednesday. She got there, and he said that .. well, he'd forgotten to order the pancreatic tests, so he needed to get her to go again .
(yeah, i wasn't too happy with that, since pancreatic issues are *the* biggest concern for imuran and the most likely reason to get blood tests in the first place).

So she went get the tests and that Wednesday (just over a week after she first started to see symptoms and just under a week after stopping). She felt better since she'd been off the imuran and went to work on Thursday with a lighter schedule.

A day or two of more phone tag and the doc called her on Friday. The doctor said there was no sign of anything wrong with her pancreas, and he wanted her to go back on imuran right away.

So, Friday night she came home from work, feeling ok. We went out for a light, bland dinner and did some shopping. She was fine -- tired, but fine. She ate well, bounced around the store and seemed good.

Friday night, she came home and took some imuran (against my advice, btw). Saturday (today) she got up after a terrible night's sleep with a 100-degree fever. She feels terrible today. I told her to stop the imuran, and she said she wanted to take it tonight and tomorrow so that she could go back for blood tests Monday and still get a good test.

So, my questions to you all:

1. have any of you ever had this kind of reaction to imuran? Not pancreatic issues, but just "ucky-ness"?

2. have you ever seen these issues take so long to manifest the first time, bu then be near-instant the next time.

3. does it make sense that we could see pancreatic issues no appear on a blood test days after she started feeling better?

4. any other thoughts on imuran?

thanks for any help/ideas.
I have to admit to being pretty down about the whole thing.

 

[Agent X20]

Hi kj
I've been taking Imuran for close to two years now. I can only give my own views, but you were quite right to see the doc if you have any concerns at all.
I've had no problems, and the drugs has made me feel a lot better. There are other issues with tiredness and fatigue, and I really don't know if these are caused by the drug or by the disease itself. The same could be said about your wife's experience... bloating, swelling nausea could all be caused by the crohns
I had to have a lot of blood tests when I first took the drug, now I only have to have a test every three months. Imuran doesn't really start to work until you've been taking it for two to three months... but I really don't know if potential problems with your liver, pancreas or whatever surface more quickly than that... maybe the doc could answer that one

People seem to react very differently to all kinds of things, it could just be that Imuran doesn't suit your wife and she need to try something else. My only problem has been the uncertainty and paranoia regarding having my immune system suppressed... but ironically, I've hardly had any infections, colds etc since I've been taking it, and much less than usual

 

[ChefShazzy]

I took Imuran for about 3 weeks, everything was fine. Then, in the third week, I felt extremely nauseous all the time, and would be violently ill bout an hour after taking the pill (I believe it was 100mg). I never had 'pancreatitis' or any problems with my bloodwork... but it made me miserable.

After Imuran, doc put me on 50mg 6MP (which is related to Imuran, my doc said it might be better tolerated...) This time around, it was about two weeks into the 6MP and my bloody diarrhea came back, as well as fever and excruiciating abdominal pain (like my Crohn's symptoms returned even though I was on 60mg of prednisone)... It was very worrisome, so we decided to stop the 6MP, too. After a week, I felt better, so I gave the 6MP another shot (I always worry that side effects are 'in my head')... but alas, no, the second day back on it, back to the bloody D and terrible pain... So, both Imuran and 6MP didn't work for me. Not a "serious" reaction, per se, but adverse enough that I could not continue those therapies.

Maybe the Imuran just doesn't agree with her... She may tolerate 6MP (also called Purinethol) . My bloodwork on both drugs appeared normal, but I felt awful. Definitely keep a daily journal of symptoms/side effects, this will help you be prepared for the next Dr. appt.

Hope that helps.
-Sharon

 

[fenway1971]

i'm on 6mp (purinethol) - up to 75mg and will be up to 100mg in a few weeks. so far no issues except for my pred withdrawal symptoms.

agent x20 - glad to hear it works well for you. like you i'm paranoid about my suppressed immune system though.

 

[Cookie]

How much imurn does your wife take? I had trouble with nausea, fatiugue and "uckiness" when my dose was ramped up to 150mg. I was taking 3 pills at once...I learned from others on the site that you don't have to take it all at one time.

 

[Agent X20]

...yes.. I take 50mgs three times a day, usually after meals

 

[My Butt Hurts]

I have taken 100 mg at once since November. No issues yet.

 

[kjhngisd]

thanks for your feedback !
(sorry i didn't get back to you sooner. I was sitting with my wife each night while she wasn't sleeping).

Shadycat -- she's only taking 50mg each day. It's the lowest dose, which was not an accident.

Sharon -- i think that's the same thing my wife maybe was dealing with. She did/does have pain in her side though, but (so far) the bloodwork came back ok. But I'm still not convinced the doc got the test right -- not being cynical, it just seemed to be a long gap between her stopping and the testing.

Update: After trying again this weekend, she admitted defeat. She's taken herself off. She is recovering slowly today. While she isn't ill, she isn't well either.
She's called the doc. At this point, it doesn't matter what the bloodwork shows -- she just can't tolerate it, so it's off the list of options.

What next? We'll have to see. 6MP is still a possibility, but so are some of the biologics. We'll have to re-assess.

thanks again for your help.
--kevin

 

[NatalieMT]

I started on 100mgs single daily dose on March 12th, about April 1st I started having some troublesome symptoms it began with mild nausea, which increased to quite persistant nausea accompanied by headaches around the temples on April 6th which landed me in bed constantly. April 7th and 8th the terrible abdominal pain began, going right across my lower stomach accompanied with D about 8 times a day. It's continued like that ever since. My first 3 weeks of bood tests were normal, waiting on the results on the 4th and have an appointment with my gastro this coming Tuesday. My GP is away, but I saw another doctor at the practice recently who couldn't decide whether it was the start of a new flare or the medication. But I'm reluctant to go back to the pred. after only just getting off it.

I've been told to go to A&E/ER for the pain and because I'm probably becoming quite dehydrated but I thought I might as well wait until Tuesday and hear it from my specialist himself either way. I also don't like to feel like I could hold up an emergency whilst I'm there you know - atleast I'm still breathing and mostly functional! I'm finding these symptoms really intolerable too though in all seriousness. I do hope your wife finds some relief and an alternative medication.

 

[island girl]

I think your wife did the right thing kevin. I took Imuran for over 3 months and was totally miserable. It was lucky if I had one good day in 7!!! I was weak and tired from no sleep and had constant nausea, bloating, gas and pain. My hemoglobin level dropped and I got a very sore throat that had to be treated with antibiotics. I persisted with Imuran because my specialist said my symptoms were not caused by it.....ya right!!! As soon as I got back on Entocort, things settled down. We all need to remember that we know our bodies better than anyone and if our doctors don't want to listen we have to make them!!!!

Hugs to your wife!

 

[D Bergy]

It is not working for her and I think you were correct to advise her to quit taking it. Some treatments work well for some and terribly for others.

The object is to get better, and sometimes doctors like to try force an ill fitting shoe onto the patient.

There are many other treatments to try. I hope you can find one that works well for your wife. I have been treating my wife for undiagnosed Lyme disease. Some treatments work well and many make her worse. We had to find treatments that work with her body, not against it.

Good Luck.

Dan

 

[bball diva]

Hello Kj,

I was diagnosed with Crohn's about 19 years ago and have been on lots of different treatments. Most recently I was on Imuran 150 MG (for about 2 years) along with Entocort and Pentasa. With Imuran I had my monthly bloodtests done and they had all been normal until about 3 weeks ago. For some reason my liver enzymes were slightly increased (bilirubin) and then I noticed some of the same symptoms your wife has - bloating, nausea and pain in my right side. My doctor sent me for a liver ultrasound which came back OK. He took me off of the Imuran thinking it was starting to possibly cause liver or pancreas problems. I have been off of it for about 2 weeks and I seem to be doing fine.

One of the side effects of Imuran is possible liver problems. I know you said that her doctor ordered "pancreas test", but did they include a full liver panel?


I hope this helps!

 

[farm]

So, my questions to you all:

1. have any of you ever had this kind of reaction to imuran? Not pancreatic issues, but just "ucky-ness"?

2. have you ever seen these issues take so long to manifest the first time, bu then be near-instant the next time.

3. does it make sense that we could see pancreatic issues no appear on a blood test days after she started feeling better?

4. any other thoughts on imuran?

thanks for any help/ideas.
I have to admit to being pretty down about the whole thing.

1. Nausea and vomiting so bad I was admitted to the hospital overnight.
2. Took imuran a few years back, 100mg daily with NO side effects. Took it this year and well see # 1.
3. My doc started me on my second round of imuran before my liver/pancreatic tests came back and the side pain, nausea, vomiting I was having led him to believe my tests would come back with increased enzyme levels, but they came back fine.
4. I can't tolerate it now and I don't know what the difference is between now and a few years back when I took it with no problems. But I find that a lot of crohns meds are like that including predisone, pentasa, imuran, entocort, etc.