IMURAN questions

I was taking Budesonide enema and then my doctor switched me to Sulphasalazine and I started getting very severe headaches, diarrhea, sensitivity to sunlight, loss of appetite and I started bleeding again. My doctor switched my medication the day before I was going to Florida for a week so my vacation was horrible because I was dealing with all these side effects. I went to see my doctor today and I asked if I could try a different 5-ASA because someone on this forum mentioned that I could be allergic to the sulphur component in sulphasalazine. She told me that since I was having 5-6 bowel movements (BMs) a day that 5-ASA's will not work for me. Do you guys agree? Her reasoning behind this was that it was not the sulphasalazine that caused the bleeding but rather the fact that I was no longer taking steroids. Her recommendation is that I go back on Prednisone along with IMURAN. I do NOT want to take an immunosupressive drug. When I told her my concerns and asked for other options, she said that there are many gastroenterologists in the area and I am welcome to get a second opinion. Needless to say, she's very stubborn and not open to answering questions. I would just like some advice on where I should go from here. My doctor told me that if I didn't start taking the prednisone soon, my next week I'll start having 15 BMs a day. I've had horrible side effects with prednisone that I just don't want to take it again and I just don't want to take the IMURAN because it's immunosuppresive. I really need some advice on what action I should take next. My UC is very stubborn and just does not want to go into remission. I read up on the IMURAN and it can increase your chances of cancer and I was explaining my concern about the future side effects of this medication to my doctor and from her tone of voice it was apparent to me that she herself was aware of the fact that many of the potential side effects are horrible.

Thank you cycling_sasquatch. Maybe it's just the word immunosupressive that scares me. My mom has Rheumatoid Arthritis and she's been on immunosupressives her whole life and I've just seen her health deteriorate and I guess I associate anything immunosupressive with being BAD because they didn't help her much. I don't really know why. I just feel like a very unlucky person and I think I'm gonna end up getting cancer from it even if the chances are so low.

Honestly, I think I would take her advice and get a second opinion. I don't think that because you tried one 5asa that you might as well have tried them all. Many people have the side effects you describe from sulfasalazine.

Is your UC mostly in the rectum or is it throughout? I can tell you that I had moderate inflammation a few years ago and I was able to get into remission with Asacol. Some people do very well on Colazal or Lialda... It's silly that she wouldn't at least give you some other options besides Imuran.

How long were you on prednisone?
When did you taper off?
Did you have a difficult time tapering off?
Were you on any other medication while tapering?

I am on 6mp and I admit, before I took it, I was so opposed to it as a treatment. I had this idea that immunosupressants were evil and bad even though I saw a lot of people on this board having luck with them. Now that I take it, I don't feel so negatively towards it anymore. It's an easy medication, 1 pill a day, not a lot of side effects. I take it before bed. It's actually easier than taking Asacol but unfortuantely I am taking both. If I were just taking 6mp and it kept me in remission, I'd feel like a normal person because that would be 8 less pills I'd have to take everyday.

I don't understand why she didn't start you on 5ASAs while you were tapering to help keep you in remission.

notsosicklygirl, my UC starts from the descending colon and goes all the way down to my rectum.

How long were you on prednisone? about 6 months
When did you taper off? I tapered off I think about mid June or beginning of June
Did you have a difficult time tapering off? HORRIBLE TIME. I couldn't move my upper body because it was so stiff. Extreme muscle pain. It was horrible!
Were you on any other medication while tapering? I was also taking Pantoloc and Budenoside enema

I don't understand what my GI doctor is doing exactly. It's very different from what other gastroenterologists have done for the people on this forum.

Thank you so much for your opinion. I really appreciate it! PS - I asked my GI doc about Asacol today because many people on this forum advised me to do so and she said it would not work because 5-ASAs don't put you into remission, they keep you in remission. She said that the Prednisone is what puts you into remission. I don't understand why I can't take a 5-ASA with the Pred this time around. Why must I take Imuran?

She said no to that as well. She's very stubborn. Once she's made up her mind, she does not listen to anyone else. When I was on the hospital in December of 2010 she made up her mind that something was mentally wrong with me and that was the reason why I was vomiting. My UC was undiagnosed at that point. We even did CT scans and they came out normal but she wouldn't believe them. After a couple weeks in the hospital, she decided that my parents were abusing me and that's why I was bleeding even though I told her at countless times that they were not. She did not believe me. It was not until the 3rd week that UC even came up. I talked to my family doctor about switching my gastroenterologist and he said he would look into it. He said that it wouldn't be a good idea because there are only 3 of them in my city and they all work at the same hospital and all of them are good friends and my family doctor said that the other 2 were reluctant to take one of their co-worker's patient from her. But since she suggested the idea of seeing someone else, I'm going to see if one of the other two will see me. If not I'm willing to go into the next city.

Thank you thatfield :) It's nice to hear that there are doctors out there that work with their patients to make a decision. Hopefully I'll be able to find a doctor like that as well.

Thanks so much hateuc. I feel the same way about stubborn Drs. I need to find a new one asap. You really opened my eyes to the fact that there are doctors out there that are willing to listen. You're right; UC is a life-long condition and it's my body so I refuse to give into her recommendations when I feel that there are alternative options. I'm going to do my research and contact other doctors. I'll talk to my family doctor about the rectal mesalamine and see what he thinks. Thanks again :)

You'll have a Gi doc for a long time. Find one who listens. I have had 6 different doctors with moving around all these years. Only a few I actually felt listened to me. A few were just ok, and there were a few that were a mirror of what they treat.

Just a note about taking immunosuppresants for life--this may not be true.  I've asked my GI about getting off of the Imuran in the future and he said it is possible.  I also take Apriso, mostly to reduce cancer risk, but being on this would hopefully keep me in remission if I go off the Imuran.  I don't like the idea of being on it for the rest of my life, and maybe in the future I will seek to go off of it.  But for now I'm fine being on it.

I am going to stop taking 6mp. I haven't had too much luck with it because I've had a lot of problems metabolizing it compared to other people. It's hard on my liver and doesn't provide me too much benefit. Unfortunate since I don't think it's a terrible option if it had worked better for me.

Hey gina,
I too was very reluctant to start on immunosuppressants. I wanted to be able to control my colitis through diet and natural supplements, like I had been most of my life. However, after my last 2 severe flares, every GI I spoke to recommended Imuran. Even my family GP who has known me all my life said that if anyone of his family had colitis, he would rather they be on Imuran than steroids. The side effects to Imuran are less scary than the ones to steroids. The last GI I spoke to said that the Pentasa I'm on will not keep me in remission, and told me that Imuran or another immunosuppressant should be looked on as an insurance policy against colitis. They lower the risk of relapse. So after years of resistance, I am taking the plunge and starting Imuran this week!! Followed in a few months by fecal transplantation. Anything for a colitis free life!!!