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akaahm
@akaahm

Posts: 11
Joined: Dec 10, 2016

Crohn's treatment

Posted by @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

REPLY

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?

@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!

@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?

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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

Liked by irenev

@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!

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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 ?

@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!

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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.

@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!

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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 ?

@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!

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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.

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

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

@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

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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?

@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

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Interesting, I was just visiting the Entyvio website yesterday. I need to have a conversation with my GI doctor about the fact that Humira has not been helpful in closing my fistula. Have also been wondering about Remicade’s relative success in this area. The fistula has been stubborn, even with a Seton stich to drain it. Frustrated.

@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

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I am so sorry to hear that Jay. I see lots of commercials about Entyvio on tv.. was not sure if its different than other biologics. Is it ?

@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

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I’m not sure how different the biologics are from one another other than some address TNF, others work differently (I think). I’ve read that Remicade is good for fistula healing, but this is anecdotal evidence. This is why I need to discuss my problem with my GI doctor to get more information. I’ve been on Humira for about nine months now.

I seen a doc on HBO a while ago. They take feces from a healthy human process it and make an enema and put it in you rectum, Sounds freaky but they got it from horses to cure them it’s for crones and Colitas, actually it was on vice! And it works ! You might find it on utube? Seems someone good bacteria can help you

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