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Cyclosporine Experience?

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Ulcerative Colitis
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Posted 9/6/2013 3:35 PM (GMT 0)
Has anyone used Cyclosporine or similar drug? I'm in the hospital right now and the GI doc may be recommending this next for me. I'm at 40mg Prednisone and still having more bowel activity than he wants (about 10x day). There's been some blood, but not a lot. That's a big improvement. There's a lot of rectal inflammation that we're trying to get reduced down. I just started weekly 40 mg Humira on Wednesday.

Last time I read about Cyclosporine, it didn't look like too appealing of an option.
Posted 9/6/2013 3:38 PM (GMT 0)
How long have you been on the prednisone?
Posted 9/6/2013 6:17 PM (GMT 0)
I've been at low dose for a couple years, 4mg. Just went to 40mg in the hospital this week.
Posted 9/6/2013 6:26 PM (GMT 0)
Why don't you try Remicade? It's not on your previous list of meds. I didn't like Humira, it wasn't very effective for me like most UC patients.

I've taken Cyclosporine twice, I have no complaints about it. couple of shakes and minor things like that....nothing nearly as bad as stupid steroids.

I will tell you that you want to get Cyclosporine at a Hospital that is experienced with it and also a GI who uses it on a regular basis, many GIs do not have experience with Cyclosporine.
Posted 9/6/2013 9:56 PM (GMT 0)
My 21 year old son was given iv cyclosprine when he was in hospital and nothing was working. He was a few days from losing his bowel. It finally kicked in and worked. He then went on to tablets while imuran built up for 3 months. Then at this stage the cyclosprine affected his kidney function and he came straight off it. The imuran wasn't enough on its own and he landed up in hospital again. He then tried remicade which did work for about 5 infusions - then stopped. These are strong drugs - they stopped my son losing his bowel so for us it was worth a try. Good luck.
Posted 9/7/2013 12:30 AM (GMT 0)
I did a 7 day IV cyclosporine treatment in the hosptial some years back. I was on it along with IV prednisone and I instantly got relief. To this day I don't know if it was the cyclosporine or the steroids that helped. After the hosptial treatment I was on it orally for about 4 months then my dr. tapered me off of it. I don't think it was even 2 weeks that I was off of it and I flared again. And worse than ever. It may be a good rescue drug but not something that works longs term from what I have learned about it. If I had to do it over again, I wouldn't do it. It's a nasty drug with crappy side effects.
Posted 9/7/2013 3:21 PM (GMT 0)
The first time I took Cyclosporine I was also on high doses of IV steroids.

The 2nd time I took Cyclosporine I was only on cyclosporine without any other IVs.

My first time I did have more side-effects and I think a lot of that was from the steroids. Both times that I was on CC the side effects were very manageable.
Posted 9/8/2013 5:04 AM (GMT 0)
If I had cyclosporine at the beginning of my last hospital stay I believe I would still have my colon. I had a very bad hospital doc assigned to me who only gave me steroids. It worked extremely well the first time I had mega toxic pan colitis.
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