Exactly 4 years since a big decision

It's 4 years exactly since I had to stop the Thalidomide treatment for my cerebral vasculitis, because it was causing peripheral nerve damage, which if not reacted to fast is permanent and irreversible. It was a shame because the Thalidomide was helping control my disease, despite the massive bureaucracy of getting the drug on prescription. On plus though the Thalidomide failure prompted me to finally demand high dose Cyclophosphamide chemotherapy infusions which had been ruled out by the consultant for fertility and other concerns. Cyclophosphamide was really tough treatment, throughout all of summer 2012. It made me very very sick, despite strong anti nausea pills. But it probably helped to stabilise my neurological disease a lot, and I've since been able to drop lots of other drugs I was having to take to control it. So the Thalidomide failing did me a favour in the end.

P.S. Before trying Thalidomide I also tried Azathioprine, Ciclosporin, Mycophenolate Mofetil and Methotrexate. I have been on a lot of different drugs since treatment started in 1998 (fell ill in 1994). And steroids too, of course.

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  • Thanks so much for your post & all the details: you inspire me.  Am v glad you're more stabilised now

    🍀🍀 coco

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