Has anyone been diagnosed with cutaneous vasculitus ?

After an appendix operation 3yrs ago . I was quite ill being in hospital for 5 weeks . Had very large painful rash , when this rash fades it leaves bruise like marks ?? Immediately following this i have chest pains ,I feel very I'll (cannot explain the feeling) and could sleep for up to three days , only waking to have a drink or go to the loo . No actual diagnosis was made at that time but am still suffering the same problems . I see numerous consultants and they have now diagnosed "cutaneous vasculitus " after being told I was a "mystery case " for years ! This is ruining my life . I have also been diagnosed with rheumatism , epilepsy , osteoporosis and asthma . Really would appreciate any feedback

6 Replies

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  • We are sorry you are having a hard time at the moment.... we maybe able to help....can you tell us where are you being seen Sarah?

  • I am being seen at the royal gwent hospital Newport south Wales . Under care of a dermatologist , rheumatologist , neurologist , general medicine and chest clinic . Thanks

  • Hi Sarah,

    This sounds complex. I will send a private message and you can tell me more about it.

    John

  • Hi Sarah,

    I have also been diagnosed with cutaneous vasculitis and also told i was a mystery case!! i also suffer with pains in my chest, back feet and legs really bad some days, i had asthma before i got this but it has got alot worse now i am covered in the bruise marks all over my arms and legs still, i woke up on 6th March this year (my birthday!!) with a few spots over my legs and behind my ears and flu like symptoms i went to the doctors and was told i had chicken pox so was suffering getting worse by the hour for 6 days at home before i was takin into hospital for 4 weeks, the doctors had never seen anything like it they kept saying, i looked like bubble wrap one said because the spots had turned into big blisters all on my arms i could not walk for the 4 weeks i was in hospital and my body swelled up really bad not a nice thing to go through i would appreciate any information you have on it or john if you read this could you give me any its the not knowing what has caused this that is so annoying.

    Thanks

    Claire x

  • Yes I have it and they call it CUTANEOUS VASCULITIS P-ANCA POSITIVE, I have suffered with it for years and hospitals saying it was Leukocytociastic Vasculitis about 2007!? but could not understand the bleeding and blood blisters. Now having Cutaneous Vasculitis they have tried almost every medication going and nothing worked.AZATHIOPRINE 250mg daily  stopped 17/09/2008

    PREDNISOLONE 1x20mg weekly stopped 17/09/2008

    PLAQUENIL (Hydroxychloroquine Sulphate) 400mg daily stopped 14/05/2008

    CETRIZINE DIHYDROCHLORIDE 10 mg stopped

    The above medications showed little or no real effect and put me on METHOTREXATE 225mg WEEKLY and FOLIC ACID 10 mg weekly, which seemed to be helping until I had a form of stroke, stopped this and put me on CYCLOPHOSPHAMIDE 250 mg Daily (tablet form of Chemo) and SEPTRIM FORTE 160 mg/800mg - this worked a treat but could only have it for 6 months! Now on Myclophenalte which is not helping really. Tiredness is horrendous as I was an active person. Still having mini strokes 12-24 hours and bleed for up to 21days every 3 months? but have blood blisters on my body face mouth,legs thighs most of the time. Well see what Consultant says next month as he is calling it a strange case? Sorry not much help but the consultants do try hard. I take photographs and a diary to consultant appointments so they know everything.

  • Souds like I used to have ,for years, before I became ill, about fifteen years ago. No-one could explain the rashes etc. Glad that they have 'got on top' of your condition before it did too much damage to you.

    Good luck anyway

    AndrewT

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