Has anyone, or does anyone take Cyclosporin for their vasculitis? What side effects did you get, did it work and how long did you take it?

[Winter64]

[vivdunstan Volunteer]

I was prescribed Ciclosporin (Neoral), in 2005 if I remember correctly, in addition to Azathioprine and steroids. I have cerebral vasculitis, since 1994, diagnosed in 1997.

Initially the Ciclosporin seemed to be helping, and I was able to lower my steroids. But longer-term it was not controlling my disease enough, and after about a year I had to switch from it to Mycophenolate Mofetil (Cellcept).

I got gum overgrowth from the Ciclosporin, as well as it pushing my blood pressure up quite a lot. I also found the pills difficult to take: extremely big, and very nasty flavour. And they should be taken with a fatty drink (the pills are fat soluble), which was a bit much first thing!

But ultimately it did not control my disease, which was why we dropped it.

[John_Mills Volunteer]

Ciclosporin (or Cyclosporin) is certainly not mainstream treatment for vasculitis.

It is an immune suppressant but with many side-effects and not so many good effects. For some reason, dermatologists seem to like it, along with various other unusual drugs, but one might question why dermatologists treat people with vasculitis when their problems are clearly more than skin deep!

[Winter64]

Hi John and Susan, Thanks for this. I am being treated by Immunology in Sheffield for vasculitis and urticaria. I asked about Methotrexate which I think is more usual but Immunology dont seem to use this. I did go to Rheumatology at the Hallamshire (we had a chat on the Vasculitis UK forum about this) but because they couldnt find any systemic involvement (despite having Primary Raynauds, muscle and joint pain,and secondary Cryofibrinogenaemia) they arent interested. So I remain under Immunology and Gastroenterology for all my stuff. Immunology dont treat vasculitis so they are treating my persistent Chronic urticaria, delayed pressure urticaria and dermographism and there is only cyclosporin left to try to get my CRP levels down (they have been raised for nearly 6 years now) and hope this works on my vasculitis too!