Maybe remission: WG/GPA 1999 After years on... - Vasculitis UK

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Maybe remission

SABG profile image
SABG
5 Replies

WG/GPA 1999

After years on steroids (off them now since April'15) and a recent decrease in MF to 1000mgs/day and off statins (could not stand side effects hurting muscles/joints) also had to come off Ramipromil for BP as allergic reaction needing A/E intervention and IV Steroids/antihistamine infusion.... but BP fine now as off steroids.

I am feeling so much better and grateful that WG is no longer 'ruling my life'. I absolutely understand that this could be short lived but I am so hopeful that the MF (Mycophenolate Mofetil) has suppressed this disease. I know I am one of the lucky ones that did not go on to develop full blown WG, I do have blood/protein constantly in my urine but the blood tests are currently OK. (ANCA negative 5 months ago)

I have had such lovely and helpful support from this group especially from John and Susan Mills, they are truly outstanding. I don't often post but I truly wish you all well with the ongoing battle with auto-immune diseases. xxx Sheila

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SABG profile image
SABG
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Barnclown profile image
Barnclown

HURRAH: am so happy for you! am so glad of your news. you encourage me enormously! wishing you all the very best XO

SABG profile image
SABG in reply to Barnclown

Thanks so much and I hope you too improve xx SABG

lnem profile image
lnem

Wonderful news!!! Long may it continue x

nirja profile image
nirja

Happy to hear this. I will only add that avoiding stress and staying calm is important to control wg and continue the remission. So, indulge in pleasurable things like music, walks, hobbies, etc. Activities such as Yoga also help. Bless you.

AndrewT profile image
AndrewT

Dear SABG,

My fingers are very, very, very crossed, for you-hopefully good news!

Kind wishes AndrewT

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