Cyclosporin

cyclosporine has a number of side effects, as do all drugs that are immune suppressive. Google it and don't be shocked at the list of side effects it may cause. Most people never experience these, or they're minimal, but you might. I take prograf aka tacrolimus. It has many of the same side effects as cyclosporine, though I have little of them. The lower your dose, the better. When you look at the side effects, remember that aspirin has a long list of what (bad things) could happen when ingested. The question is what's worse; the disease and its effects, or the meds you take and their effects. In my case, no prograf and my liver transplant fails. I'll take the side effects from prograf any day. Beats dying.

David and Connie, thanks for the info. I had looked up CYCLOSPORIN before I posted so I saw the million and one side effects, but wasn't sure which ones really affected anyone. I've been on Imuran for 11 years and I don't think that I have any side effects from it--I have a low white count, but I have been told that is because of my spleen eating up everything. I have PSC also.

I just like to know as much information as possible--and first hand testimony is the best in my opinion.

David, I agree, I will take any side effects over no progress or getting worse!

Thanks!

Post Edited By Moderator (hep93) : 6/18/2012 8:59:48 AM (GMT-6)

Girly Girl,

I know one person with AIH who couldn't take any other immunosuppressants and her docs tried Cyclosporin and it worked great.  She's been on it for close to 10 years and from what I can tell, she is living life to its fullest and doesn't appear to have any problems with it.  I'll email her separately and ask but I don't think it's any worse than any of the others.

Hey Girly Girl,

If you want to email her directly, she told me to give you her email address.  So you can shoot me an email (just click on my envelope tab under my name to the left).  Then I'll send it to you.

Hello! Im a bit late to this post but thought i would share with you my experience of cyclosporin.. i am also on it for a skin/blood immune disease. I have been on a dose of 100mg for a year then 200mg for 6 months while i taper off of prednisilone..

All the side affects on the internet are always scary so i will just tell you from my experience what i have come across...

the first thing i noticed straight away within the first few days is the hot feeling in my hands and feet, sometimes within my chest as if i had a warm water bottle on these places.. i havnt put my finger on what makes it happen on certain days but this is just an unusual feeling and something i can live with, it does in no way hurt or affect my life...

the one side affect being a girl that really annoys me is the hair growth, i am caucasian and light haired naturally however when taking cyclosporin within a few months i had peach fuzz (light hair growth) all over my body in places i didnt even know females could grow hair (shoulders, cheeks etc) it's fairly mild the hair would only be 3mm or so but in sunlight i notice it.. its not dark or anything but still makes me feel less feminine..

I have had good success so far with cyclosprin to taper off my prednisilone and still havnt had recurrent symptoms of my disease i am pleased.. it is def a strong drug and something that shouldnt be taken lightly..good luck!