Cyclosporine

[saltimbanc0]

Anyone been treated with this? Experiences etc. I kind of imagine it as like azathioprine but much more concentrated and quicker acting...though equally increased risks.

 

[Misty-Eyed]

Ooh yes I've been on it. Was a few years ago now though.

I remember the tablets were MASSIVE but I'd had enough practice by then to swallow them.

I also remember that I got fur like hair coverage all over my body. Useful for the winter months, I guess. I think my eyebrows also got darker, my hair suddenly went really curly (and never reverted back) and I think it's the only time I've ever managed to get a tan in my life.

No serious side effects to report. I think it worked ok for a while. It certainly did more than the azathioprine did.

 

[saltimbanc0]

Thats something to look forward to then Right now im not sure what theyre planning, actually neither do they. i think the intention was high dose IV for a week or so. Whether they want to do longer term on tablets, maybe depending on how i respond or not. It seems to be an interim or kind of management til they can sort the surgery in light of all the other problems. Im willing to give anything a try at the moment. Any physical changes in the state of my body now will only be welcomed as this is NOT my body anymore.

 

[jfb115]

Cyclosporine IV and Pills

I have UC and after going off prednisone and taking Lialda and 6-MP my GI felt that those medications were helping, but just not enough to heal my colon. The options he gave me were cyclosporine, remicade, or go back on prednisone. Chose cyclosporine bc he thought it would be more likely to be successful.
I did the IV and now the pills. Was hooked up to the IV for 10 days in November, I got 250 mg. every 12 hours. This stuff is pretty harsh on your veins - I had to have the location changed 4 times back and forth on my arms because the area where the IV was would get swollen and really painful. After the 4th day they put a line in my neck and left it there for the rest of the time. My GI told me that someone else came in for cyclosporine at the same time who was worse off than me and she left after a week feeling much better, going to the bathroom normally, etc which kind of made me feel crappy since I didn't feel better by the time I left. On my last day they did a colonoscopy to see how things looked and apparently they looked much better so they released me and had me take it in the pill form - 225 mg twice a day. The pills are huge, but you just kind of get used to it. Make sure you go and do your bloodwork every couple weeks. After 6 months of being on this pill I feel much much better - no more running to the bathroom! I also see a nutritionist now that I feel much better. Normally people will be on this medication at a high dose for 3-6 months and then taper off, but my GI wants me on it a bit longer. I guess for some people it just takes longer to work.
Side effects from both the IV and the pills - increased hair growth, swollen gums, and tingling feeling in my feet and hands, especially when it's cold out and I come inside and I warm up or when I get in a hot shower.
The pills are apparently manufactured by a couple different drug companies, so make sure you always get it from the same company. This medication can be really expensive, so if you get Sandimmune from Novartis, they do have a Patient Assistance Program and the people there were really helpful and helped me get my medication directly from Novartis at no cost to me for 1 year - hopefully I won't be on it longer than that!

 

[ameslouise]

Hey there, I was on cyclosporine IV way back in 2002 when my original DX was UC. Cyclosporine is an anti-rejection drug used for transplant patients. It works the same way as immunosuppressants in that it stops your body from attacking itself.

I had a HORRIBLE reaction to it the night of my first infusion. My doc said he had only seen one other person react like that in his 30 years of giving it. Aren't I special? I had excrutiating joint pain, like a 14 on a 1 to 10 pain scale! I had to stop after 3 infusion and the same reaction each night.

I didn't realize it was still out there as a treatment option. I haven't read about it here. Good luck - I hope it works for you!!!

-Amy

PS I am not meaning to scare you. Just wanted to share my experience.

 

[saltimbanc0]

Hmm that puts a different slant on it. My biggest problem with the Addison's disease when the cortisol is low is excruciating bone/joint pain. I wouldnt wish it on anyone and hear you on the plus 10 on the pain scale. Its hard to explain until you experience it yourself. I have just trasnfered to a different hospital ass where i was couldnt manage thigns and the endocrine issues made it too tough for them. I will probably stay as is over the weekend but yesterday we thought again urgent surgery might be needed. I guess they will reasses on Monday now but here there are a lot more options open i think so will be interesting to see what they throw to the table.
Assuming you didnt carry on, what did you find that worked for you?

 

[Crohnie2003]

I will be starting Cyclosporine on Friday, July 19th for 14 days. Excited to see if it will give me some relief, but not happy about 14 days in the hospital! I have exhausted all of my resources and we are trying to buy time before my next surgery. Hopefully they will have a new med out there for me to try that I haven't already tried. Not looking forward to the excessive hair growth! I dont want to look like the wolfman or woman I will try to post an update on here when I can. I appreciate the previous posts on this med, it does help me to read other peoples posts regarding a new med! Thanks!