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any experience with cyclosporine?

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Ulcerative Colitis
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Posted 10/15/2009 8:49 PM (GMT 0)
i am wondering if anyone has been on cyclosporine and what your experience was while on it.

how fast did it work?

any side effects?

how long were you on it?  etc any other info would be appreciated.

Thank you

Posted 10/15/2009 8:58 PM (GMT 0)
I haven't been on cyclosporine, but when I was flaring severely for a while my doctor said that typically when things aren't settling down he recommends a 7-10 day course on cyclosporine (IV?) in the hospital.

I had to travel so couldn't do it then, and didn't follow up on it as I was much better by the time I got back.
Posted 10/15/2009 10:26 PM (GMT 0)
I've never had it either, but I've been told it's really a rescue med- used to get one in remission to undergo surgery. It's a pretty nasty drug, that's why you need to be hospitalized while you get it. There are a few on here who have had it, went into remission, then stayed there for quite some time. But I don't know if they're still in remission, honestly. It's not a maintenance med.

Posted 10/15/2009 11:46 PM (GMT 0)
thank you for your replies.  i am hospitalized right now (have been for over 2 weeks now)and my GI team has suggested a cyclosporine treatment to kick me into remission (hopefully) because nothing else is working on me.  i am not healthy enough for surgery yet and am on IV nutrition and protien drinks around the clock.....

 

in doing some research on this drug though it is kind of scary and i am very concered as well as my GI team because i only have 1 kidney and this drug is very hard on the kidneys and can cause kidney failure.....ultimately it is up to me if i want to go on it or not but i am leaning toward not...i just dont want to risk the rest of my body you know...its just so tough...

 

anyways thank you again for your replies i do appreciate it!  :)

Posted 10/16/2009 12:13 AM (GMT 0)
Do you know how much of this you will have to take? My dad took Cyclosporine for YEARS (he had no choice with the disease he had) before it affected his kidneys. I don't remember the amount he took per day in pill form compared to what you'd be given with an IV. Can you ask the docs that? Would one 7-10 day course harm the kidneys? I'm not trying to make light, I myself saw what the med does but like I said, my dad took it for years.

good luck! I hope you feel better real soon.
Posted 10/16/2009 1:37 AM (GMT 0)
healingelements,
I was on iv cyclosporine in 1999 for a month in the hospital. I was also on TNP, morphine and antibiotics. They tried a lot of drugs before the cyclosporine. Nothing was working. The side effects are really scary to read but I never had any side effects from the treament. I was in full remission until 2006, and then I started having small flares which became steadily worse until I was hospitalized again in Sept. with an abscess which was later rediagnosed as a fistula.
Do the doctors say what the probability is of any of the drugs hurting your kidney or are they saying "this is what we need to do to keep you alive?" The second statement is what they told me. If it became necessary, I would take it again. It was worth it to get my life back.
I wish the very best for you and a speedy recovery. Please let us know how you are doing.
Posted 10/16/2009 3:43 AM (GMT 0)
i am also on TPN and lipids, was on 2 different IV antibiotics and have been taken off those...i was just taken off IV steriods and put on the pill steriods today...

they are not saying that "we need to put you on this to save your life"  they are saying that this would be the fastest option to get me into remission and get me out of the hospital hopefully.  My other option is Azathioprine and Remicade....which is what i am leaning towards even though it could take a week or two before seeing results i feel it is the safer route to go for me...They said i would go home and have to stay on the azathioprine and remicade regamine and also do the home TPN and lipids.  get constant blood test to monitor everything and hopefully go into remission get my nutrition back up and become healthy again and come back for surgery.

Posted 10/16/2009 4:10 PM (GMT 0)
I would do the second option. It would be much safer for you. Western doctors push surgery a lot. It isn't a panacea. It is, however, a very personal decision. I have been fighting that battle ever since I was diagnosed. I still have my colon and hope to keep it. This is my sixth week of missed work so perhaps I'm just being small-minded and stubborn.
Everything you listed as follow-up treatments sound very normal. Remicade wasn't available in 1999-2000 but everything else was part of my treatment.
It sounds like your spirits are pretty good. Keep up the good spirits. I'm rooting for you!
Posted 10/16/2009 5:45 PM (GMT 0)
I was on IV cyclosprine in hospital which worked very quickly; amazing actually. Probably saved my colon. Then I was discharged and took cyclosporine in tablet form for about a month (I think) whilst I got on to azathioprine. That was about 6 years ago and except for 2 months flaring I have been in remission. I didn't suffer any long lasting side effects either and I consider that I am in good health at the moment.
Posted 10/16/2009 7:28 PM (GMT 0)
Replying to the first post & a similar story to capsid. I was in hospital for a week or so before I was started on IV cyclosporine. It took about two weeks to work. I was prepped for surgery but really really didn't want it so kept up with IV steroids and cyclosporine and got there in the end.
I took the tablet form for about 6 months afterwards whilst I was getting established on the azathiropine then came off it o.k.

I felt week and ill whilst on the IV and even on the tablet form I was always tired, had night sweats and a few other bits but as it got me off the surgeons radar so it was well worth it.

I left hospital almost three years ago and have been on asacol and aza ever since with no sign of coming off either.

Overall my experience of it was good.
Posted 10/18/2009 2:34 AM (GMT 0)
There are 2 members who posted about success with cyclosporine, Malka & KS1905 (Keith), who haven't written here in a while, but you can likely look up their past comments. They were both treated at Mt. Sinai Hospital in NYC, which has a respected IBD center. Best wishes for improvement in your condition soon. / Old Hat (30 yrs with left-sided UC ... [etc.])
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