Imuran Fear....

I took Imuran for 5 years. I had no side effects from it. I have a friend in her mid-70's that was hospitalized 3-5 times a year for huge small bowel bleeds from Crohn's disease, She had so many transfusions she lost count. When Imuran first came out as a possible treatment for CD she went on it. Since then her CD has been in remission, and no further hospitalizations. It has been a real wonder drug for her.

I understand your hesitations. You must weigh those against the possible complications that active Crohn's can cause. Ultimately, the choice is yours. It is difficult to deal with so much at your younger age. Your doctor is correct in wanting to get you off the entocort. While it normally is like a topical treatment for the lining of your bowel and colon, in some people some of the steroids can be absorbed and cause systemic problems. You only have to internet search the side effects of long term prednisone usage to see what might be down the road for you.

It gave me really bad pancreatitis for an entire year and I had to have a feeding tube for a while. It's a pretty rare side effect, and I took it for a year and a half before getting it. It never got me in remission, not even when combined with mesalamine. Now I'm on Remicade and I prefer it.

Porkysgal - have ur symptoms stopped since you went off Imuran? Sorry to hear about your brother. Hopefully things are better with reactions and ur on something that ur body can tollerate.

Scifigal2k - don't know much about pancreatis - what were ur symptoms - would you recommend this drug or would you suggest asking for something else ?

Banana girl - my GI said I would get labs every two weeks... Is that what ur dr suggested / you did?

Thank you ides! It's nice to know that some ppl can tolerate :)

Extreme upper abdominal pain that went through the back. My upper abdomen bloated out about two inches, literally, by the time I finally went and saw a doctor. (I have GERD and severe CD, so pain is something I'm just kind of used to sucking up!! I'm sure you know how it is!) The problem was that I went off Imuran immediately and still had pancreatitis off and on for months. I was in and out of the hospital, had a feeding tube, and had my gallbladder removed, and it finally calmed down.

Many GIs are actually recommending starting off on the biologics (Humira, Remicade, etc.) before trying other meds. It depends on where your disease is located, too. Some meds only target certain areas. Since the biologics didn't work for you, Imuran really is a good bet. Also, just to be very clear, before the pancreatitis I had absolutely no side effects at all for the year and a half I was on it. Wasn't the most effective, but was better than nothing.

with the hair loss - does your hair grow back if you stop taking the medicaition? 

I REALLy am thankful for all of you that posted comments... they have been extreamly helpful!

Ashley

I am back on the Imuran since last month due to having problems, had a colonoscopy and my the disease is back at surgery site, but like I said I am having some weird stuff happen, not sure if it is the Imuran with my skin and hair loss, waiting to see the Dermatologist next month. I did ask a friend who is a Pharmacist if you take a med for a long time with no problems, stop and then start again is it possible to have some side effects and he said yes, it happens all the time so not sure what is causing this. My nose and cheeks are all red like the butterfly rash. I do have fibro and a positive ANA so not sure.

Interesting Ides, I do take a B12 injection monthly as it runs on the low side due to resections. I will have to check about the folate level, thanks.

I began taking Imuran in 1994 as a treatment for fistulizing Crohn's (in addition to the prednisone I was already on). I have had no new development of fistulas since I began taking Imuran. Since 2005, I take a lower dose as I am using it strictly as a maintenance med at this point (post ileostomy surgery). The only problem I had was my MCV was well over 100 so I began B-12 injections shortly after I started Imuran. After my surgery in 2005, my folate levels were low so my dr. prescribed 1 mg. Folic Acid daily. I experienced some mild hair loss prior to beginning the Folic Acid but it has since returned to normal.