Experiences with
Immunosuppressants1,311 public posts
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Stopping Thalidomide treatment; starting Cyclophosphamide (in addition to masses of other stuff)
It was going really well, and I was getting my steroids down, with the hope of getting off some of my other immunosuppressants as well. Thalidomide pills are taken nightly, and they are really easy to take.
Losing driving licence due to cerebral vasculitis
I don't know if people with other forms of vasculitis ever lose their driving licences due to their vasculitis, but this happened to me, with cerebral vasculitis. My symptoms are similar to MS and other related neurological diseases, and so it's not too surprising I eventually lost the licence, even
Trying Thalidomide for cerebral vasculitis
I've tried lots of treatments over the years, since being diagnosed in 1997 (ill since 1994). Cyclophosphamide was ruled out initially for fertility concerns (I was only in my early 20s, and hoped to have children), then more recently for fears of worsening my already very severe bladder incontinence
My experience with cerebral (CNS) vasculitis
I have cerebral vasculitis, in a somewhat progressive form, similar in day-to-day symptoms to multiple sclerosis. I have been ill since 1994, when I was just 22. I was initially misdiagnosed with ME. I was finally diagnosed with cerebral vasculitis in 1997. My disease developed somewhat slowly initially
Chickenpox and immunosuppressed people
If you haven't had chickenpox as a child and catch it later when on immunosuppression drugs this can be a life-threatening situation. Chickenpox can kill healthy adults who don't have immunity to it. It can certainly kill immunosuppressed ones who haven't had it before.
I started Azathioprine
Flu vaccines and whether to get them
Normally flu vaccines are recommended for people on immunosupressive drugs. I've had many annual flu vaccines since being diagnosed with cerebral vasculitis in 1997. But now I can't have them, under consultant's orders. It's partly because I'm on a huge cocktail of immunosuppression drugs (now 4 immunosuppressive