Vasculitis: Has anyone been diagnosed with... - LUPUS UK

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Vasculitis

kyliesinead profile image
13 Replies

Has anyone been diagnosed with vasculitis? Went to see a dermatologist and he thinks the rash on my lower legs is vasculitis. I'm waiting for a biopsy to confirm and to show what type. It appears as a mass of tiny dots around the ankles and some spots along the line of my veins on the calves. They are red to begin with and fade to brown, just like bruises. Any thoughts would help. Thanks. My diagnosis for now is UCTD .

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kyliesinead
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13 Replies
tracynoe profile image
tracynoe

I have vasculitis along with UCTD raynauds and a pituitary cyst. There is a dedicated sectiion of health unlocked for vasculitis along with a FB page which you could join and ask questions

kyliesinead profile image
kyliesinead in reply to tracynoe

Thank you for that response. I also have Reynolds, but only a mild version. I will seek out the vascular section.

in reply to kyliesinead

Hi - I have RA rather than Lupus but also get the rash you describe and have asked about Vasculitis because I have severe small fiber neuropathy or Raynauds. My GP thinks mine is folliculitis but I am really not so sure. Like yours mine fade to brown after a while and come and go.

My rheumy asked the dermatologist and he looked at pictures and said he thought it was Scurvy - which it definitely is not! Will be interested to know how yours goes. Good luck!

Twitchy.

kyliesinead profile image
kyliesinead

Thanks. I will keep you posted but may be a while !

Hullsue profile image
Hullsue

I have had that rash for many years - my ankles look black sometimes or dirty brown - it is part of the Lupus illness unfortunately - I take Adalat Retard twice a day which helps with the ciculation - I used to get really bad chill blanes as well but since on the drug that isn't so bad. Unfortunately there is nothing to get rid of it so I have to wear tights if going somewhere special so that it doesn't look so pronoused .

kyliesinead profile image
kyliesinead

It's a pain isn't it? Just one of the many things we have to grin and bear. Thanks for your response.

I took photographs of my vascultis flares when at their worst. It helped a great deal as often it is difficult to describe weeks after.

kyliesinead profile image
kyliesinead

I did the same, but fortunately I was having a flare on the day I saw the dermatologist. Can that be called good luck?

notoverthehill profile image
notoverthehill

yes I have Vasculitis and it has caused me a serious amount of health problems but I'm still here and kicking Does knowing the name for dieases cause us to worry too much or should we be told everything?

kyliesinead profile image
kyliesinead

Personally, I think it's best to know what we are up against so we can equip ourselves to deal with it. However, too much speculation can cause unnecessary worry, so we should only try to deal with what we already know. With this particular set of conditions though, there is not a lot we know for sure. Thanks for your response; I knew that vasculitis can cause all sorts of issues and I'm sorry this has been the case for you. I will just try to deal with things as they arise. Good luck.

Existing62 profile image
Existing62

I also have this same exact thing&assumed it was due to lupus! I'll be interested in hearing what your results are. I was sent to a "specialist" yrs. ago before my lupus diagnosis, she said it was from shaving!! She barely looked@it &it runs down to my foot. I do NOT shave my feet! Waste of time&money! As for her specialty, your guess is as good as mine-LOL!! Hoping you get a better answer! I will be checking back,keep us posted. I am in a flare&have the rash now.

kyliesinead profile image
kyliesinead

Maybe you should get a second opinion. The dermatologist certainly had a good look at the rash, even used microscope. Got my biopsy date for September 12th, then have to wait for results. I keep thinking that it's like gathering clues to a jigsaw puzzle. It's certainly a pain waiting for tests and results.

DianeMcQueen profile image
DianeMcQueen

Hi,

I have SLE, Vasculitis, sjogren's syndrome, RA and a few other secondary conditions. I have been taking Dapsone tabs 150mg per day for years for the Vasculitis. Initially these were great however, recently it has been flaring every week along with horrendous pain in shoulders and head. My symptoms include extreme pain in lower legs, swelling and stiffness, burning hot and itchy and unsightly red blotches (burst blood vessels) that eventually fade to brown before going away. I usually flare the week before my period, if i am on my feet for long periods, wearing certain shoes and unfortunately when I drink alcohol. Hope this helps. x

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