Does anyone have vasculitis (blood vessel damage) as complication of lupus? Been told I have it recently. Its rare but real!

I was told my lupus was stable. Suddenely I caught a cold from the kids, got a chest infection and sore blisters over hands and feet. I was very poorly and was put back on steroids and given anti-biotics. Have had painful red/purple blisters for 2 months now and have just been told it is vasculitis. Had no idea could get further auto-immune diseases even when on immuno-supressants. Apparently the immune response reacted aggressively at cold/chest infection. This triggered blisters/vasculitis. Still in shock because vasculitis is another scary disaese just like SLE that can affect any organ/part of body. Can anyone advise me if they have also experienced vasculitis and offer any hope please? Trying hard to understand it.

18 Replies

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  • Hi

    I have vasculitis as well as CTD and raynauds there is another section on healthunlocked dedicated to vasculitis where you might find more answers.

  • Hi

    Many thanks for coming back to me and giving me this information.

    Renu

  • Hi Renu

    I have also recently been diagnosed with vasculitic lesion on hands & feet. In reality they have been coming & going for years, but never there to show the rheumy.

    Unfortunately with lupus we can also have a cross over into any of the other auto-immune diseases. It is something that the rheumy's are constantly keeping an eye out for at review appointments.

    As tracy already said, there is a Health Unlocked vasculitis page, & the info on the website is very helpful too. I know it's really scary to be told you have this condition as well, but now that it has been identified you will be monitored carefully, & your treatment planned accordingly.

    Have you read The Spoon Theory? The lady who wrote it has a number of cross over auto-immune conditions, & the way she describes it is great. She says that 'lupus never comes to the party alone.'

    Sad but true! Mr lupus & his mates may be having a party in your body right now, but the doctors are on his case & will sicking a restraining order on him very soon. So hang on in there gal.

    Very best wishes. X

  • Hi roobarb

    I have looked at the vasculitis page and yes it was helpful as was the vasculitis webpage. Thank you for your response, it is nice to talk to someone who understands. You are right "lupus never parties alone!" I shall see what my Consultant advises me on Wed in relation to treatment etc. You are right, my GP has said they will now monitor me more closely. Take care and once again thanks for the encouragement. How long before your blisters/rash cleared on hands and feet? I have had it for 2 months now.

    Renu

  • Oops! I meant to say sticking a restraining order on Mr Lupus, but sicking one on him sounds just as good!

    It varies greatly how long my skin lesions last. I have had the current ones for 3-4 months, & haven't had any treatment for them yet as I am having my kidneys checked out. Some are in the same place, some moving around. Most of them are the reddish dots, called peticheal hemorrhages, I think. I don't feel anything from them unless the skin comes away & then it can be sore until it heals. I've also got some different ones on my fingers tips, which are like reddish, purple hard areas just under the skin. These are more uncomfortable, especially with temperature change. They have been there since January.

    What are yours like, are they painful? I'm sure they will start to go, once you get the correct treatment sorted out.

    Lupus vasculitis was featured on Embarrassing Bodies last week. I haven't watched it myself, but I think it's still on iplayer. A friend told me the patient was prescribed Mycophenolate.

    Keep positive Renu, it's sounds like your medical team are looking after you well. It's just frustrating to have to wait for all these tests when we just want something to make us feel better.

    BTW, do you have Raynaud's as well, or lupus rashes? I wonder if they tend to come go hand in hand with vascultiis?

  • Hi Roobarb,

    My rash has been quite painful on hands and feet (red inflammed areas on fingers under the skin) and purple/red on toes, back and front and on soles of feet (top end). They are not as painful as when they first appeared. A months worth of prednisolone helped. I think they are starting to heal now after two months. Thank you so much for your kind words and advice. You are right my medical support is great and it makes a difference. My hands and feet are always frozen - is this anything to do with vasculitis or not. My spots are painful but also itchy, sometimes tingling and numb.

    All the best with your kidneys being checked out !

    Renu

  • I'm glad to hear that the rashes are improving for you. I hope you can get them fully under control asap.

    I've had Raynaud's syndrome all my life, so I'm used to my hands going numb & white at regular intervals. But these sores are something different to what I've become used to with that.

    My rheumy was going to try me on methatrexate, but wnats to wait on kidney test results now. Hopefully which ever drug she decides on, will sort both things out.

    Keep me posted how you get on. X

  • I love the way you described this x

  • Hi Renu

    I also have vasculitis secondary to SLE. As the others have mentioned the health unlocked page is really helpful as is the vasculitis website. Take Care xx

  • Hi Rachy24

    Thank you for responding and for your advice.

    Take care

    All the best!

    Renu

  • I have vasc as well, u'd b surprised how many of us do. Sometimes things aren't as uncommon as we're lead 2 believe :/

  • I agree with you sher since it has been mentioned by my doc I know friends who have friends with lupus made me wonder how many people have it and is it more common than than what the docs thinks x

  • Thank you both for letting me know because my GP told me not everyone with lupus will get it and made it sound quite rare but it seems alot of lupies have responded to my e-mail and have actually got it. Thank you all for your advice and encouragement.

    Take care

    Renu

  • I have also taken vasculitis but it has not been the rare one as u have mine is temporal arteritis which can cause blindness so I was lucky that my Doc caught it and put me on steroids but now need to also go on methotrexate Yes lupus keeps throwing at us so many problems when we least expect them.Take care and hugs

  • Hi Voutton,

    Hope yours is now stable or becoming stable. My doctor has put me on something new taken me of aziothioprine and started me on something long winded starting with m and ending with moefil???? He said this should help improve lupus, muscle disease and vasculitis so fingers crossed!!

    Look after yourself and thank you for responding.

    Renu

  • I was also put on MMF 2 years ago and have progressively good results, then ive got a pure diamond of a consultant who really knows his stuff, im so lucky to get such excellent treatment : )

  • MMF seems to be doing the trick so far 4 my symptoms ; )

  • Hi Pattismith thats great to know and reassuring. Thank you. I've started it and am hoping for the best. Luckily, I too have a great Consultant.

    Renu

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