Hi, i was wondering if anyone else suffers from vasculitis? I had problems with my left hand back in jan where fingertips would go hot, swell n go deep red nearly purple. I went to doc's in may n they did blood tests for vitamin d which i had to take supplements for. Since then my right hand has started having same problem. I had appoint with rheaumy yesterday n he said it looks like vasculitis n have to take prednisilone for 2mnths and up methotreaxte to 20mg.

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  • This is interesting as I've had the same problem with my fingertips lately - they only go deep rasberry red when they are cold (as if I've dunked them in Ribena) but when not icy then they burn. I've suffered from severe parasthesia in both hands and feet and arms and legs for over a year now and have only recently been referred to a neurologist - will take a while before I'm seen. The GP thinks it is Raynaud's/ circulation secondary to my RA but I'm not so sure. I do have a strange folicular rash on my legs on and off and personally I think it could be a type of Vasculitis - but my rheumy is only interested in swollen joints :-(

  • That's interesting Twitchytoes, the nurse i see at rheaumy first thought it was raynauds disease but then thought it was vitamin d defiecency. I have the problem regardless of putting hands in cold water. It just triggers of whenever.

  • Mine was triggered by walking in heat last weekend and the cold water was my attempt to soothe. I have constant burning pins and needles and numbness in feet and hands but sometimes it worsens. I have never been tested for Raynauds or Vasculitis - not convinced there's enough specialist knowledge where I live to diagnose rarer types of autoimmunity.

  • I don't get pins n needles. my fingertips just pain n are very hot to touch n swollen. I felt it very slightly in my toes today aswel. Hope u get some good specialists help. x

  • Thanks. I'm desperate to get to the bottom of it I admit. Just hope the neurologist can help. My fingers are very painful now - I do have RA but this is different. Have you looked at the Raynauds & Scleroderma HU community yet? Also Vasculitis UK is excellent. There is a condition that often goes with Raynaud's called Erythromelalgia where extremities go red hot and swollen and burning. Worth looking up as relates to Lupus for some.

  • mine started with raynauds years ago(around 1995).now have painful sore fingers -turn blue from raynauds and sores around nails and knuckles.stinging sensation on palms.raynauds is onset of lupus?cannot hold or carry anything in left hand.

    so tired al the time -just want to sleep.

  • Sounds more like raynauds than vasculitis to me. The only way they can confirm vasculitis is by biopsy and most of the general population would be classed as vitamin D deficient in January if tested.

  • Sound v similar to my long term symptoms which have been diagnosed as simultaneous raynauds & erythromelalgia secondary to systemic lupus. V few doctors know enough to spot erythromelalgia. There has been a lot of discussion of this subject on the HU raynauds & scleroderma forum

    However, I am being watched for vasculitis, partly due to my simultaneous RP&EM, but also due to various symptoms including vasculitic rashes which have responded to topical steroids (betnovate)

  • Hi there ush, i have raynards plus, vasculitus, livedo retalaris, sle, serousitis etc etc, from what i experience, when im in any weather toes always frezzing in cold weather fingers, toes go purple ( raynards cauising this effect) vasculitus with me a little blood vessels bursting, like little blisters of blood..but her goes i have a condition livedo rectalaris its a blue vein like pressence pattern, some call corned beef legs etc,, but this is diff it a a umique patteren like a honey comb and it joins up all up my arms, legs hands, in different weather and depending on how im feeling my hands swell and go bright red, in water doing dishes, they go rasberry colour swell and can really itch also..also if you wear white gold livedo rectalaris sufferes come out with tiny blisters say around where their ring is, its a common reaction..hope this helps lupus is a mine field, im lucky i have a great lupus nurse and consultant...if you have a good rhumy mine striped me down and looked at all the markings on my skin, the way it moves and my blood vesels. Maybe worth you having a chat about your any skin issues, lupus can show through as organ, problems, skin, nerves anywhere that blood flows lupus can effect so its everywhere x lucky us hay x

  • Thank u for all the replies. It's all very weird as still not 100% what it maybe. I have started the prednisilone fingers crossed it beging they begin to help. x

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