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Cyclosporine for Inflammatory Bowel Disease

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Ulcerative Colitis
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Posted 2/10/2015 9:00 PM (GMT -5)
I was looking online and read a bit about this drug, anyone use it?
Posted 2/10/2015 9:04 PM (GMT -5)
I know it's rarely used
Posted 2/10/2015 9:15 PM (GMT -5)
From my understanding, it's one of the last ditch drugs used to get symptoms in control prior to surgery. Due to the heavy side-effects and the immunocompromising nature of the drug, it is used only temporarily and in exceptional circumstances. I would never take it under any circumstances.
Posted 2/10/2015 9:27 PM (GMT -5)
Ive considered taking it, and may in a bit if I cant get this 5.5 year flare under control soon. It works analogously to aza and 6-mp, but is much much stronger. Its not very dangerous in the short run and at the doses we take for UC
Posted 2/10/2015 9:32 PM (GMT -5)
Everyone I know who has used it for UC has since gotten a j-pouch.
Posted 2/10/2015 9:39 PM (GMT -5)
I've taken it twice, it works within days. Couple of things are that you need to be treated by GI who is experienced with Cyclosporine and most of the time it needs to be started in a hospital setting.

It is safe in the dosages and length of time that IBDers take it for. My side effects were minimal but if I had to do it all over again I would have chosen surgery instead of Cyclosporine.....I'm very happy with my j-pouch.
Posted 2/10/2015 9:46 PM (GMT -5)

Pluot said...
Everyone I know who has used it for UC has since gotten a j-pouch.

Excellent point Liz but most of "us" weren't mentally ready for surgery at the time. It bought me about 8 years of delaying my surgery. Hindsight being what it is I would have chosen surgery over Cyclosporine if I could do it all over again.
Posted 2/10/2015 9:54 PM (GMT -5)
This sounds like one really strong drug!
Posted 2/10/2015 9:58 PM (GMT -5)

Guardian7 said...
Due to the heavy side-effects and the immunocompromising nature of the drug, it is used only temporarily and in exceptional circumstances. I would never take it under any circumstances.

It almost sounds like you are referring to Predisone except for the exceptional circumstances part. I was much happier and healthier on Cyclosporine then when I was on Predisone.
Posted 2/11/2015 6:25 AM (GMT -5)
I personally don't recommend this drug. It's extremely toxic. I had a seven day IV treatment of it in the hospital at one point when I was really sick and very desperate. Then I had to take it orally for a bit. It only worked for short period of time and I had very unpleasant side effects. Just not worth it in my opinion. I wish I had opted for j pouch surgery before putting myself through all those drugs because honestly, having J pouch surgery is the only thing that has worked.
Posted 2/11/2015 8:49 AM (GMT -5)
My daughter toughed it out for 4 months on Tacrolimious, it's sister drug. She had to have weekly blood tests. It did bring her to remission for awhile, and got her through one more semester at school. Side effects for her were fatigue,dizziness and a drunk feeling, and then even it stopped working. It is considered bridge therapy...we were waiting for Entyvio's approval.
Posted 2/11/2015 11:30 AM (GMT -5)
They pushed cyclosporine for me when I was nowhere near bad enough for surgery yet. I refused because of the bad experiences I'd read on this site.
Posted 2/11/2015 8:40 PM (GMT 0)

ks1905 said...

Pluot said...
Everyone I know who has used it for UC has since gotten a j-pouch.

Excellent point Liz but most of "us" weren't mentally ready for surgery at the time. It bought me about 8 years of delaying my surgery. Hindsight being what it is I would have chosen surgery over Cyclosporine if I could do it all over again.

Don't read too much into it ;) I wasn't making a "point," more an observation!
Posted 2/11/2015 3:43 PM (GMT -5)
Iv cyclo did not save my sons colon.
I guess he is lucky he still has kidneys, his blood levels of the drug got high.
Old Mike
Posted 2/11/2015 4:57 PM (GMT -5)

Pluot said...

ks1905 said...

Pluot said...
Everyone I know who has used it for UC has since gotten a j-pouch.

Excellent point Liz but most of "us" weren't mentally ready for surgery at the time. It bought me about 8 years of delaying my surgery. Hindsight being what it is I would have chosen surgery over Cyclosporine if I could do it all over again.

Don't read too much into it ;) I wasn't making a "point," more an observation!

I wouldn't argue with that "observation", I agree with what other people say in that is a bridge. People who need Cyclosporine will most-likely have another severe flare and since there is no cure for UC they will at some point chose surgery then trying Cyclosporine for multiple times.

They were offering me Cyclosporine for the third time and I'm like what is the point, one of these times it's not going to work for me and I will need surgery anyway or unfortunately need my colon removed because of dysplasia. If I was going into the hospital for a 3rd time then I was having surgery.
Posted 2/11/2015 5:44 PM (GMT -5)
I took a short course of Cyclosporine last year following a serious flare that landed me in hospital. The IV steroids didn't work, so I was given the option of cyclosporine or infliximab. The cyclosporine worked within a day or two and I managed to keep my bowel for now.

It made me shake and made my skin yellow (high bilirubin) but it did the trick and as I only had to take it a short time while the azathioprine (then 6MP) kicked in, I would do it again.
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