Does anyone have unclassified Vasculitis?

Last time I saw my consultant I was told of the vasculitis classifications, the description went like this: "If group of rheumatologists are put into a room and decide on the diagnostic criteria for the variious types of vasculitis at the end of the discussion 25% of cases do not fit within these criteria and therefore remain unclassified"

I am one of the unclassifiable I have symptoms from lots of different types and side effects from treatment.

I take MMF and have been on this for 4 years now with success I also take Prednisolone and have done for over 6 years it is only in the last 12months that I have been able to reduce the dose to 8mg but still have not been offered a bone scan.

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  • Hi, John here. Vasculitis can be difficult to classify and diagnose differentially.

    Send me a private message listing all of your symptoms, even those that seem irrelevant plus all the treatment, with rough dates if possible..

    What treatment have you been given to prevent osteoporosis? If you have been on more than 10mg for several years, I think you would be justified in requesting a dexa-scan.

  • Hello Tracy,

    I too have 'uncatorgorised' vasculitis, about five strains, of it, so I'm told! I'm on Prednisolone and Azathioprine, amonst other medications. I am also on dialysis, three times a week. I don't know if this any help but let me know, will you.

    Best wishes anyway

    AndrewT

  • Hi Andrew

    Thanks for answering it's a strange comfort to know that there is someone else that does't fit the criteria for named variations. I have tried azathioprine but it didn't work properly for me and inflamed my liver so I was put on to mycophenolate 4 years ago and it works for me. I still get flares although these are easier to cope with now. I have been fortunate that although I have had kidney problems in the past they are at the moment ok. I still take prednisolne and I am now classed as steroid dependant so have sick day rules and an emergency hydrocortisone injection in case I am ill. Every time I go to see a consultant I come out with something else on the list of whats wrong with me it can be frustrating and then they tell me to avoid stress!!

    Hope you go on OK

    Tracy

  • What I can never understand about the strange world of vasculitis is that you can have unclassified vasculitis where they cant pin it down to one thing or one type or another, or at the other end of the scale, like me you have lots of symptoms, and a skin biopsy which confirms the diagnosis as per text book but the consultants still dont believe the result! Its a mad condition :)

  • Hi there,

    I too have not been able to obtain a diagosis, whilst in hospital 5 or 6 years ago my hospital records read "This man is a medical mystery!"

    I was tested for just about everything and as all my test rsults were negative it was decided I was the the healthiest man in the hospital although flat on my back!

    However I responded dramaticaly when given a cocktail of drugs including Prednisolone and Azathioprine, I am now back on my feet - just, and feeling fine. It is assumed I have an unspecified strain.

    Other drugs I take are vast quantities of Tramadol and paracetamol, and a Calcichew amonmg others every day.

    .

    EricB

  • Dear Tracy,

    Glad that 'they' seem to have sorted you out, kind of anyway; probably the best you will get!!

    Let me know if I can give you any more information; nothing too taxing though!!

    Best wishes Andrew

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