Thinking of stopping Imuran??

[Newfie_Girl]

Good Day,

I'm new to this group, but not new to Crohn's Disease. I was diagnosed in 1998, when I was 23 years old. I have been on Pentasa and Asacol, until I had my children. After having twins I then went on Imuran and have been on it now for 8 years. I have always had a mild case of Crohn's, no surgery, just a couple of hospitalizations back in the early days. Over the past few years I have developed a severe sensitivity to sunlight, I have had a yeast infection for 3 years and joint pain. I am now considering stopping the Imuranm, without the consent of my current GI. I just moved cities and my previous GI was going to take me off the Imuran, but my new one doesn't want to do that. I have been symptom free for 8 years now, with one bout of bleeding last year (no diaherria though). Anyone have any advice?

Thanks

 

[handle]

Hi,
If you do decide to stop imuran, at the very least it should be done extemely slowly - take a year or more to ease your way off. If you need to, then you can bump it back up. I think most people believe you need to be on some kind of maintenance med.....pentasa perhaps. Glad you are doing well, and have not had any major dramas.
good luck.

 

[Gwen pippy]

Hey Newfie_Girl

I did what you are thinking, wasn't on Imuran for as long as you maybe 4 yrs or so, stopped taking due to accident that left me housebound and unable to get meds for a week, then tried to go back on and had reactions to it. crohns remained in remission but GI insisted it wasn't possible to be in remission and not on meds and I relunctantleyagreed to scope, I then started to relapse (not saying scope caused relapse don't know what did). It was worse 8mths of my life barely clung to life the day of my wedding. had miscarriage and ended up in hospital for weeks.
I don't want to be negative but if you are in remission and having a good run with the Crohns, talk to another GI get a second opinion about changing meds and being monitored.

I wish you the best of luck.

Let me know how you get on

Gwen

 

[Newfie_Girl]

Thanks Gwen,

I am booked to have a colonoscopy done next March. Why I am not sure other than the fact I haven't had one done since 1998. I dread it really and I have a belief also that it could trigger things again. I'm going to dicuss stopping the imuran tomorrow with my GP, as you pretty much need a note from god to get in touch with your GI here I am really nervous about relapsing again. Not that I had it severe as some people have, I can't imagine what others go through. It was bad enough for me being housebound for fear of not being close to a washroom even then. I have a couple of friends who have really bad cases of Crohn's and I know they suffer. I am just so paranoid about the side effects I am now experiencing after all this time being on it.

Take care,
Kim

 

[Gwen pippy]

I hear ya,

I dreaded the thought of scope (think I'd be used to it after 24yrs but don't think anyone gets used it to) when they suggested it in Jan this year, said I needed time to get my head around it now I have two small children, but things got worse and I had to agree to scope two wks ago, I didn't feel in bad relapse more like bad irritable bowel and they said they had to stop at left side due to inflammation and kept me for a few days.(worst nightmare) IV preds then oral preds, iron infusions, the works. But feel so happy now that it was caught before it was an issue.

I can relate to the housebound thing, stayed in for two yrs a long time ago and it's horrible way to live nobody should feel that way. I so grateful to my husband and family for helping me break the cycle. but for some my heart breaks that they are that bad.

The side effects are a tough one though, esp if we are to stay on these meds long term. I hope you find a different med that will keep you good and a GI that will listen, I had a few good GI over the years but boy have there been a few nightmares. My GP thought I was a nurse when he first met me because of the information I was able to relay but he has been great and always puts my mind at rest.

Will be thinking of you.
Gwen

 

[spingirl]

I stopped taking meds (not Aza - I was just on Asacol) and I am so sorry I didn't take them the way I should have. I had no symptoms so I thought I was fine but now I am in my worst flare ever and developed strictures to boot. Now I am ok again...sort of...with Aza. I hate the joint pain but its nice to have something that seems to help. Be very careful if you stop. Wean off...take your time. Don't wait too long to go back on. That is what I did. I spent about a year of running to the bathroom when I finally got nervous because I started having pain I never had before on my side. I know the meds are not fun but just be very careful and don't make the same mistake I did. I remember one doctor telling me I was doing myself a grave injustice. I wish he had explained what he meant. I didn't really understand. Now I do...

 

[mom2twogr8tkids]

I use to be on Imuran. It worked very well for me. The only reason I stopped taking it was bc my immune system was so low I couldn't fight anything off. I stayed sick all the time and would go in and out of the hospital. My advice to you is don't stop taking it without taking something else. So just talk to your dr and tell them your concerns and why you want to stop taking it.