Has anyone disgnosed with Churg Strauss Synd... - Vasculitis UK

Vasculitis UK

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Has anyone disgnosed with Churg Strauss Syndrome (EGPA) has experience of taking Alemtuzmab (Campath)

Suzym2u
Suzym2uModerator

Question from the face book group if anyone can help

Just wondering if anybody has had - Alemtuzumab

Dr David Jayne has put me forwards for it. I have to wait until June, 6 months clear of Rituximab but hopefully I will finally be able to get things under control with this new one...

Any info anyone has on this treatment would be great?

thank you

4 Replies

Sorry no I have not, but I too have CSS and the Rituximab is not working at the moment, just one or two more doses to take. I wish you well on this treatment, please would you update how you got on, I too have tried everything bar Cyclo which cannot be given to me unless it is life or death as I have had bladder cancer. I cannot take oral steroids either. Hoping that this drug works for you and brings you into remission. (horrible word) but I hope so.

Suzym2u
Suzym2uModerator in reply to Mitz

I think this is a drug trial Mitz at Addenbrookes, Campath has been successful for treating some cases of refractory WG ( GPA ) and MPA so it is being trialled for refractory CSS. It is has been very successful for treating Behcets.

Susan

Mitz
Mitz in reply to Suzym2u

Thank you Suzym2u.

Well I really do hope it works for you and I shall keep my eyes open. Sorry you have been having so much bad luck with the drugs too. I have several CSS in other countries, I'll ask them about it, they might know more. If I get any responses I will post back. Good Luck.

Suzym2u
Suzym2uModerator in reply to Mitz

Thank you, I am asking on behalf of someone else, who is starting this new drug very soon

Susan

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