1. < Digestive Health

Crohn's treatment - Question about Imuran (Azathioprine)

Posted by akaahm @akaahm, Dec 10, 2016

Hi,
I was diagnosed with Crohn's about 15 ears ago. I was lucky that the symptoms were mild for several years andt did not need strong drug intervention until about 3 years ago. My doctor put me on Budesonide 9mg/day. The drug worked really well but each time we tried to lower the dose in attempt to tapper it off the symptoms come back.. So I become what you call a "steroid dependent". So I had to switch to a new doctor since my doctor moved out of the area. The new doctor suggested to switch to Imuran. I started reading about Imuran and got really terrified of the potential side effects. I have to questions: 1) has any one been on Budesonide for longer than 3 years, any problems ? 2) The same for Imuran, is it helpful, any side effects and how long can you take it for ? Thanks

Akaahm

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 10, 2016

Hello @akaahm,

Welcome to Connect; Crohn's Disease can make coping with day-to-day life such a struggle. We're glad you've come to Connect, where you will meet many members with similar symptoms who can help answer your concerns.

@mjgarr, @lija, @david1952, @stargirl, @smashly, @hopex, @nidhi, have all discussed taking Budesonide, and I hope will join this conversation.

@thankful, @jay_baruch, @chicoco, @gonefishinmt, @karma, @danrofohio, @ramonab, @tonia, @klisa24, @girls5kmd, could you also please share your experience about taking Imuran?

@akaahm, did you know that Mayo Clinic has a blog on IBD (Crohn's disease and ulcerative colitis)? Here is a quick link to the blog's posts and videos where Mayo Clinic gastroenterologists talk about Imuran (Azathioprine):
http://mayocl.in/2gqtwjm
@akaahm, we would love to know more about your journey with Crohn's; other than medications, how have you managed to deal with the disease?

REPLY
1 reply
Guener | @guener | Dec 11, 2016

@akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well for me. The side effects do sound scary, I know, and I had to get monthly blood work to check on me. Eventually my white cell count fell too low, and I had to stop taking the drug forever. I wouldn't let this frighten you away from trying it out for your circumstances, though. Now I'm on Apriso and Humira and faring pretty well, despite ongoing battles with a fistula that doesn't want to heal. Good luck with your treatments!

REPLY
4 replies
akaahm | @akaahm | Dec 11, 2016
In reply to @kanaazpereira "Hello @akaahm, Welcome to Connect; Crohn's Disease can make coping with day-to-day life such a struggle...." + (show)
@kanaazpereira

Hello @akaahm,

Welcome to Connect; Crohn's Disease can make coping with day-to-day life such a struggle. We're glad you've come to Connect, where you will meet many members with similar symptoms who can help answer your concerns.

@mjgarr, @lija, @david1952, @stargirl, @smashly, @hopex, @nidhi, have all discussed taking Budesonide, and I hope will join this conversation.

@thankful, @jay_baruch, @chicoco, @gonefishinmt, @karma, @danrofohio, @ramonab, @tonia, @klisa24, @girls5kmd, could you also please share your experience about taking Imuran?

@akaahm, did you know that Mayo Clinic has a blog on IBD (Crohn's disease and ulcerative colitis)? Here is a quick link to the blog's posts and videos where Mayo Clinic gastroenterologists talk about Imuran (Azathioprine):
http://mayocl.in/2gqtwjm
@akaahm, we would love to know more about your journey with Crohn's; other than medications, how have you managed to deal with the disease?

Jump to this post

Thank you Kanaazereira for welcoming me. I hope to get valuable information and support. It's very comforting to know that I am not alone with this. Thanks

REPLY
akaahm | @akaahm | Dec 11, 2016
In reply to @guener "@Akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well..." + (show)
@guener

@akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well for me. The side effects do sound scary, I know, and I had to get monthly blood work to check on me. Eventually my white cell count fell too low, and I had to stop taking the drug forever. I wouldn't let this frighten you away from trying it out for your circumstances, though. Now I'm on Apriso and Humira and faring pretty well, despite ongoing battles with a fistula that doesn't want to heal. Good luck with your treatments!

Jump to this post

Thank you so much Jay for sharing with me your experience with Crohn's and specifically with Imuran. As of now I am doing fairly good on Budisonide (Entocort, not sure if I spelled it correctly). My dilemma is to stay on Budisonide till it does not work and then switch or start switching now to Imuran...Jay, how long did you stay on Imuran ?

REPLY
Guener | @guener | Dec 11, 2016
In reply to @guener "@Akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well..." + (show)
@guener

@akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well for me. The side effects do sound scary, I know, and I had to get monthly blood work to check on me. Eventually my white cell count fell too low, and I had to stop taking the drug forever. I wouldn't let this frighten you away from trying it out for your circumstances, though. Now I'm on Apriso and Humira and faring pretty well, despite ongoing battles with a fistula that doesn't want to heal. Good luck with your treatments!

Jump to this post

I was on Purinethol (6-MP) for two years before I had to quit. It did get me off the steroids, thank goodness for that. It takes time for the immune suppressors to work, FYI, at least in my case it was 4--6 months to start feeling the benefits. Mind you, this was when my CD was the worst, too, but then I felt quite a bit better.

REPLY
akaahm | @akaahm | Dec 11, 2016
In reply to @guener "@Akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well..." + (show)
@guener

@akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well for me. The side effects do sound scary, I know, and I had to get monthly blood work to check on me. Eventually my white cell count fell too low, and I had to stop taking the drug forever. I wouldn't let this frighten you away from trying it out for your circumstances, though. Now I'm on Apriso and Humira and faring pretty well, despite ongoing battles with a fistula that doesn't want to heal. Good luck with your treatments!

Jump to this post

Jay, I am very glad you are doing well on Humira... . It sounds like you were not happy with the steroids, was it straight Prednison or Budesonide ?

REPLY
Guener | @guener | Dec 11, 2016
In reply to @guener "@Akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well..." + (show)
@guener

@akaahm, I took 6-MP, similar to Imuran for a couple years, and it worked really well for me. The side effects do sound scary, I know, and I had to get monthly blood work to check on me. Eventually my white cell count fell too low, and I had to stop taking the drug forever. I wouldn't let this frighten you away from trying it out for your circumstances, though. Now I'm on Apriso and Humira and faring pretty well, despite ongoing battles with a fistula that doesn't want to heal. Good luck with your treatments!

Jump to this post

The Prednisone works wonders, but unfortunately for me it gave me avascular necrosis of my hip, which meant I had to have surgery (a bone graft) and coincidentally I'm getting replaced totally tomorrow.

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akaahm | @akaahm | Dec 11, 2016

Wow Jay. I wish you the best of luck and speedy recovery. you gave me a very valuable info. Thanks.

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irenev | @irenev | Feb 9, 2017

How about Entivio infusions have been on Budesimide and Lialda for 7 months not working am waiting for insurance approval hopefully will help give my quality of life back

REPLY
4 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 9, 2017
In reply to @irenev "How about Entivio infusions have been on Budesimide and Lialda for 7 months not working am..." + (show)
@irenev

How about Entivio infusions have been on Budesimide and Lialda for 7 months not working am waiting for insurance approval hopefully will help give my quality of life back

Jump to this post

Hi @irenev,

Welcome to Connect. It must be disappointing to realize that certain treatments don't work; however, I would encourage you to visit Mayo Clinic's IBD blog, where you will find valuable information on Entyvio, and budesonide. You can view the blog here: http://mayocl.in/2kx7VpX

I hope @jay_baruch, @akaahm, will also join this conversation.

@irenev, could you share a little bit more about your history with Crohn's? Besides the medication, what other steps have you taken to relieve the symptoms?

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