Vasculitis flare ups on and off for years and drs are confused. Please. Has anyone had this problem. I feel very alone with it

Vasculitis flare ups on and off for years and drs are confused. Please. Has anyone had this problem. I feel very alone with it

It all started when i was 6. I started having spots apear all over my body and i was bleeding internally aswell as external with ulcers abd lesions. This was diagnosed with vasculitis henochshonline purpura. I took dapsone for a long time and was in remission through all of my teen years.

Then i came to adulthood. At the age of 23 i started having spots flare up and disappear again right up till 2 years ago.

This leads me to present day almost.

2 years ago i had the spots come back so badly that i had 8 holes on each leg sone the size of oranges and just as deep. I was treated with prednilone which seemed to work for a week. The spots disappeared but the holes remained. Every few months the spots come back and i have to go on prednilone again i still have one hole in my leg but now its gotten to a point that whenever i drop my dose of steroids tge spots start to reapear again.. Drs font understand why it keeps coming back and are confused as biopsy shows normal in the lesions. And yet i have these vasculitis looking holes. Spots and blisters that haunt me ever day.

Soon as i become stressed (which the spots make me anyway) or active (cleaning tge house or taking the children to school) or even if i get ill with a cold it seems to make the situation much worse.

Has anyone else had this problem?? And how was it dealt with? If its been delt with. I feel very alone with this condition and a little afraid as it seems no one anywhere can relate :( its an ongoing nightmare that doesn't seem to have an end

Thanks

I have given a pic of what it looks like when it starts up. Does anyone have a rash like this and know what it is??

7 Replies

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  • So sorry to read you are having such a bad time. Can I ask which hospital you go too and could you tell me if you have regular kidney function blood tests. Vasculitis UK have a helpline if you would like to talk to someone one to one either by email or phone vasculitis.org.uk/helpline

  • Wishing you well with your difficult journey and sending positive thoughts of support. Please keep pushing.

    HSP appears difficult for the medical profession to undrrstand (like other Vasculitis types I guess).

    The help line team on this site are fantastic and we speak to them for advice and guidance on who to deal with and what to ask.

    Good luck.

    .

  • I've been recently diagnosed with Wegeners and I know I've had this for many years prior but undiagnosed. My symptoms wax and wane too. I can get so bad that my lungs bleed and I get blue lighted into hospital and then feel ok for long periods. I have Crohn's too so was treated it's the same drugs they use for Wegeners so I was probably saved the worst ravages by immunosuppressive drugs plus good old prednisilone. I've never really been off of the prednisone since 07 although am down to just 5mg now.

    Why have you never been place on any immunosuppressive drug ? That seems crazy that you haven't and remiss of whoever has been treating you

    Do you use Facebook? There is a great page called vasculitis support and is full of us vasculitis sufferers plus trained medical people. Please do ask whoever is treating you about placing you on a steroid sparing immunosuppressive drug and if it works with your variant of this group of diseases.

    I had a big problem with cysts and huge boils that needed a general Anasthaetics to remove and I have 3 holes. I can't imagine how you feel with such horrific things happening but it sounds like whoever has treated you has not treated you well and with the right combination of drugs.

    God bless and keep you

    Jools

  • I have had two bouts of vasculitis since being disgnosed with fibromyalgia. Three different doctors dont know why or if it is conne ted to fibro. I have been told it will likely come back. It was on both legs and there is still slight dicolouration and the skin feels shiny and yet dry where the rashes have been.

    Gently hugs

  • Sorry I cannot offer any advice but I thank you for posting as I am new to the disease and I have recently developed painful sores on my fingers. Just a slight bump sends chills. Prednisone doesn't seem to be helping as my dosage was just tripled. However I am awaiting my immunosuppressive prescription.

    Hope you get some relief soon.

  • Hi Cornette,

    That sounds worrying. What type of Vasculitis do you have? If you have sores on your fingers caused by reduced blood supply secondary to Vasculitis then there is a good chance you need IV treatment. Where are you seen?

  • I am in the states and seen at the Mayo Clinic. However I am 4 hours away so I don't get seen regularly and I have a local rheumatologist that isn't as familiar with the disease. I have CNS vasculitis. I should be going up to Mayo in the next week or two so my dr up there will be able to check these out.

    The sores are a couple months old and recently in the past month started developing some numbness in my thumb where the first two blisters originated.

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