coming off meds: Hi all! I was diagnosed with... - Vasculitis UK

Vasculitis UK

7,843 members6,852 posts

coming off meds

sarahdollygirl profile image
3 Replies

Hi all! I was diagnosed with Chrurg Straus in 2012, which has been controlled since by medication including Methotrexate. I have finally seen a specialist here in France who wants to run some tests as he has no evidence of the initial tests which led to diagnosis, fair enough. He then said that as I have been stable for 4 years and depending on the results of the tests he wants to reduce the medication with a view to getting me off it...hurrah!!! I had understood from the specialist at St Thomas's in London that Churg Strauss was for life and that i would therefore be on the meds indefinitely - any ideas anyone? is it possible just to have one bout and recover?? I would be so excited to be off the medication, it leaves me so weary and irritates my stomach so

thanks

Written by
sarahdollygirl profile image
sarahdollygirl
To view profiles and participate in discussions please or .
Read more about...
3 Replies
DevonLottie profile image
DevonLottie

Hi Sarah, I don't really have an answer for you except to say that people I know with churg Strauss (I have gpa wegeners) are having their meds reduced here in the uk suggesting there may be new protocols? You're right that cuss, like gpa, can recur.

DevonLottie profile image
DevonLottie in reply to DevonLottie

That's css!

karens62 profile image
karens62

Hi Sarah, Here in Canada the attitude seems to be to reduce but not to eliminate. I've been stable for 11 years. During that time, I have had my primary immune suppressant [Cellcept] reduced by 50% but not eliminated. Last time I saw my specialist [a nationally renowned expert], she said I might be able to reduce it. No talk of elimination though.

Not what you're looking for?

You may also like...

Off meds but anxious 😟

Hi all. I have been off Azathioprine and prednisolone since April 2019. Whilst I’m glad I’m not on...

Nerve pain with MPA

Just thought I would share my outcome with nerve pain in my gums and teeth due to Vasculitis MPA....

Coming off prednisilone

Diagnosed MPA early 2013. Done the usual run of meds. Cyclophosphamide, just finished number 19....

Getting off Pred.

I've been diagnosed since 2002 with WG/GPA. Just wondering if anyone else has been able to get off...

COMING OFF PREDNISOLONE

Hi All, I was diagnosed with vasculitis just over a year ago. I reduced pred very quickly down to...