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Cyclosprorine anyone?

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Ulcerative Colitis
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Posted 5/22/2010 2:57 AM (GMT 0)
Hi: I usually post in the Crohn's forum but thought I would post here b/c I have Crohn's Colitis. Anyway, had a doctor's appt this morning and he wants to put me on oral Cyclosporine. I was pretty surprised because I thought that was a pretty heavy duty drug. Mind you, I've been on a lot (6MP, Remicade, Humira) and they've only made me worse. Wanted to know about people thoughts and opinions of cyclosplorine -- was it awful, did it help, etc.

If that doesn't work, then methotrexate. If that doesn't work, I'm looking at a perm ileostomy.
Thanks for your feedback.
Posted 5/22/2010 5:03 AM (GMT 0)
Don't even consider ileostomy. Follow the diet that I have suggested and within months you will be fine...but you will have to stay on that diet. See my post on this subject.
Posted 5/22/2010 11:40 AM (GMT 0)
umm, yeah, I wouldn't follow anything the poster has said above. I actually knew two people that were on cyclosplorine and they are doing great. Though, they were not on Humira and Remicade. Not sure if that matters or not. I will have to talk with them again to gain more insight from them but they were indeed doing very very well. BTW, it is not a bad idea to start looking into surgical options. Exhaust the medical frst then you make your decision. It is your life and you have to be happy. Hopefully everything works out.
Posted 5/22/2010 12:12 PM (GMT 0)
hey im on cyclosporine now, at the same time as 6mp.

by no means has it put me into remission, but it did help a lot ( went from 12+ bathroom trips a day to about 6 atm)
the side effects weren't to much to handle for me. ( hands and feet often feel like they are burning, i used to get the shakes and tremors a lot in the first 2 months on it but it has settled down, and excess body hair growth.)

i would however check with your doctor if he knows for sure it is safe to go on cyclosporine after the use of remicade. as my doctor has ruled out me going onto remicade as he says a few who have done it at the same time or shortly after stopping cyclosporine have had serious side effects and there has even been a few deaths due to serious infections and what not. ( think he said i would need to have been off it for over a month before he felt comfortable putting me on remicade)

not sure if it works the other way around though, dine you did remicade first it may be fine.
Posted 6/7/2010 8:06 PM (GMT 0)
webby90 - What is your plan for cyclosporine? Are you going to stay on it indefinitely or switch to something else. Trying to figure out if I should do cyclosporine, methotrexate or push for the anti-map meds. Thanks.
Posted 6/8/2010 6:44 AM (GMT 0)
dietcoke,

i am actually only going to be on cyclosporine for a max of another week or so. ( but that is because i am having surgery on the 23rd :) yay )

but from what my doc told me, you cant stay on cyclosporine indefinitely anyway, he said he didnt want me on it for more then 4 months. it was just supposed to be more of a short term fix till the 6mp kicked in ( which never happened for me ). i also had no luck on methotrexate.

hopefully these drugs work for you.
Posted 6/8/2010 5:00 PM (GMT 0)
Cyclosporine is not used as its very strong and mainly given to ppl with transplants. all though i would love to doc to give me some of that to stack with my MMF as it should stop my UC for good.

Cyclosporine can be given indefinitely but the side effects are far grater than almost all other medication so must stress Cyclosporine should be consider as one of those last resort medications. (others reading)
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