can vasculitis go for ever

[carl2]

i was told today that i had 1percent of vasculitis and that it has gone now and it defintley would not come back, i was very ill in 2013 had 3 strokes and was in hospital oxford and northampton for a month ,i had about 30 blood clots and anerysum ,i had 6 cyclophosmide and 3days of intrevenus high dose steroids ,2yrs 60mg steroids and azathioprine for 3yrs and clopideral , today my neurologist said he reducing azathioprine as vasculitis would never come back,i have brain vasculits ,is this true that vasculits of the brain will never come back.

[Hidden]

I would ask him what evidence he is using to say that. My understanding is that all types of Vasculitis can relapse after treatment, I know of several patients with Central nervous system Vasculitis who have relapsed.

[carl2 in reply to Hidden]

thankyou for reply

[Melon]

My CNSV has been diagnosed as a chronic (long term) issue which seemed to be the norm. Fortunately it is mild and manageable with prednisone taken when a flare starts to develop. The only mention of an end to this by my consultant was that there is some evidence of symptoms stopping in your 70s although I think he may have been referring to people with my particular presentation of the illness.

[carl2 in reply to Melon]

thankyou for reply

[LMB2]

I also have cerebral/Central Nervous System Vasculitis. I was diagnosed 5 years ago and have been on steroids ever since. Like you, I had 6 sessions of Cyclophosphamide. I am also on 3000mg of Mycophenolate daily (similar to Azathioprine). I have been told that I will have vasculitis for life and will therefore be on the medication for life to control it. Apart from the steroids which I am tapering. I agree with Keyes - ask the doctor what evidence he has. Vasculitis is rare and CNS vasculitius is extremely rare - just 1 in a million. Therefore many medical professionals are not that knowledgeable about it. I wish you luck in the future - keep well.

[carl2 in reply to LMB2]

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[carl2 in reply to LMB2]

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[Chris-Bromsgrove]

My understanding is that generally with Vasculitis, if you have remained in stable remission it is sometimes possible to wean you off your maintenance medications. This of course depends on individual circumstances and I do not believe it provides any guarantee that you won't flare or relapse in the future.

[carl2 in reply to Chris-Bromsgrove]

thankyou for reply

[Rowmarsh]

Definitely not. I asked my consultant at the Royal Brompton the same question having been in remission from Churg Strauss for many years and constantly ANCA negative with low eosinophil counts. He replied, that remission is only remission and careful and lifelong monitoring must continue as vasculitis is unpredictable . How true he is. Before I went to the Royal Brompton, my local hospital treated me for years and I told I was in remission and the vasculitis was no longer a problem. Three years later, I was diagnosed with Class 3 heart failure with major damage to the heart organ caused by Churg Strauss. The disease is evil and works under the wire in my opinion and I treat everything the doctors tell me with major caution and reservation . In reality, most doctors do not understand vasculitis and quite honestly you know more than they do because you live with the disease.

[carl2 in reply to Rowmarsh]

thanks for reply

[PMRpro]

My understanding of ALL autoimmune disorders is that even if they go into remission, whether due to medication or spontaneously, the potential for the autoimmune part of the disease to rekindle remains for life. I suppose there is a lot to be said for weaning patients off drugs if the remission holds without - but it is a mega step to say it won't ever come back and I really don't know any doctors who would go that far with any such disorder.

[carl2 in reply to PMRpro]

thanks for reply

[carl2]

hi everyone ,well i got my ansewer today from america vasculitis ,it can go into remission but it will not go compltely and they not herd of 1per cent vasculitis either ,so dont belive all what they tell you,