Urticarial Vasculitis Help

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Beginning in May of 2016 I began noticing a faint red rash on my legs. It was almost like razor burn but didnt hurt. It lasted a few weeks and went away, but then it came back and far worse, spreading to my feet and all the way up my thighs. I saw my doctor in June and he recommended blood work and referred me to a dermatologist who couldn't see me for a month. By the time I got to the Doc at the end of July, my flare ups were very frequent, a few times a weekend or every weekend. I had a flare up about 4 days prior to my appointment and when I went it was so faint the doctor couldn't do anything. He looked at the pictures of my flare ups and confirmed it looked vasculitic, but without seeing it in person he could not diagnose and told me to come back in for more tests when I have another flare up. Well with the waitlist it is impossible to time a flare up with an appointment  and the cost for the specialist is outrageous. I was able to get my PCP to set up my tests at a 24hr clinic and by September I got in for the bloodwork again. At this point I was trying to narrow down my triggers, most flares were on weekends. I drink a little on the weekends, but there were times I'd drink during the week without any sign of a flare up. My flare ups became more intense and on my wedding night I had straight up hives with blood vessel damage as well that went from my toes to my arms, I even had spots throughout my pubic area. I have tried cutting gluten, which didnt make a difference. I quit drinking, no difference. I noticed the hivey version of my flare ups are worse when I drink white wine, but nothing is really that consistent. I am leaving for my Honeymoon tomorrow and I am so tired of having itchy, burning, red flare ups all over my body. A day after the flare up, the spots are bothersome except I am covered in splotches. I am not looking forward to a week in a bathing suit looking like this. My tests came back with none of the major illnesses/diseases that cause vasculitis and my doctor isn't wanting to treat it with medicine as he says usually it goes into remission on it's own. IS there anyone out there who can provide some insight to this or give me some ideas of what I can do? I am pretty desparate at this point. I am a 29 year old female that is pretty healthy aside from a severe car accident I was in at age 21 that left me with a lot of metal in my legs. 

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  • Posted

    Sorry you are feeling so bad. I have vasculitis and the problem is that ot is very difficult to diagnose. I only ever have raised esr and crp which are inflammatory markers. So I am not sure why your doctor ruled it out without further investigations.

    Afraid I can't make suggestions about how to treat the rash. It is not a symptom zi have much. I get really bad hive type spots sometimes but not the type of tash you dedcribe. But I would recommend contacting Vasculitis UK who have a free helpline and ask them for any tips.

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  • Posted

    If you have been properly tested, then I would imagine that that included hepatitis C?

    There is an abnormal protein in blood that is associated w/ hep C but several other illness' as well, most of them w/ an underlying 'autoimmune' component. This protein is called 'cryoglobulin' and when present in one's bloodstream, will cause "showers" of symptoms that in my case anyway, present as red spots (petechiae) that vary in size, shape and depth of color. Petechiae are usually some shade of red but I've also experienced purple, with the latter ocurring early on in this 'discovery process'/acute phase. These spots in my case, seem to appear primarily when I am standing/walking for extended periods of time and if I work a double shift, the spots are multiplied. I have found however, that simply by wearing light compression (18-22) knee socks, my spots are significantly diminished. You are right about trying to time flare-ups or 'showers' w/ a Doc's appt...it's virtually impossible. I usually just document w/ a photo.

    Hope this is helpful to you and others as well.  Read up on 'cryoglobulinemia' just to familiarize yourself w/ a variety of situations that can cause this symptom. With all due respect to our PCP's out there, this type of situation is usually best managed by an Interist, as opposed to a Family Practitioner at the least and a specialist as well, as in Rheumatologist - they have the expertise in handling situations of an 'auto-immune' nature. I'm not sure about the metal in your legs btw... that may have some bearing. I'm not a doctor but I am a nurse who has lived with and struggled with this, for close to a decade and I'm just sharing my personal experience.

    Good Luck!

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    • Posted

      Thank you. I was tested for Hep C and do not have that either. I was just informed by my specialist that my lasted round of tests were never reviewed and it has been moved to top priority so maybe this will bring some clarity. I will do some research on cryoglobulinemia. I really appreciate the help. 
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  • Posted

    Megan, I'm sorry this is happening. I was diagnosed w/vasculities this year and it was super scary because every Dr. I went to didn't know what it was. I finally went to an immunologist and he was able to diagnose me. (Ive had it for almost 2 years) I've been on hydroxychloroquine (immune suppressants) for 6 months now and my spots have been staying away thanks to my rheumatologist. Before I took the meds I was a mess. My joints hurt, I had red spots all over my legs, a little on my stomach, and arms. I notice that if I dranked alcohol, ate too much sodium or even got a little feverish it would flare up. Sometimes I would flare up right away, other times it'd take a few days to show up. I stayed away from those things and got an air purifier too because the dust/dander that was lingering in my house made me flare up too. I also tried to eat super healthy and when I did those things, my spots were pretty tamed. I hope this helps in the meantime. Let me know how it goes and I'm wishing you all the best.

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    • Posted

      Thank you for your reply. Everything about the alcohol(though it seems only certain types) sodium, and fever definitely apply to me. I did notice that I didn't have a single issue when I didn't drink white wine. My husband recently found he has very high blood pressure so we are making some lifestyle changes and I am hoping this helps me as well. 

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  • Posted

    Hi Megan, my UV was only diagnosed with a skin biopsy, after years of problem and many many blood tests. In the past prescription medication helped - ciclosporin, an immunosuppressant, was good at high doses, but my dermatologist was unhappy me being on it long term because of cancer risk.  Reacted very badly to Dapsone, but now on Hydroxychloroquine, which I am assured will work given time.  In the meantime I feel like a burns patient. 

    ?I don't think there's anyting you can do without diagnosis and medication, other than antihistamines and painkillers.  I found out of all the antihistamines the only one that made any impact was Benedryl with acrivastine.  And painkillers help that burning feeling, a bit.  Also steroid gel helps.  Your GP could prescribe you a course of steroids which will help, but it might only be temporary.

    ?This is too late for your honeymoon, so I hope you managed to have a good time despite your skin. 

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    • Posted

      Thank you! I was actually able to fully enjoy. I had a flare up a the day before I left and once it went down, my legs were actually the clearest they've been in a long time. I did however just have a flare up that came up Saturday night. I have an appointment in Feb. but my DR said to call with my next flare up for a biopsy. Just curious if they did your biopsy with a fresh flare up or if it had been a couple days? I want to call to have mine done this week, but it's gone down and is just the purple splotches now. 

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    • Posted

      I had 3 samples taken, two from an area I'd scratched to pieces and one that was just a bit blotchy and raised, and I'm not sure which one or if all showed the vasculitis I'm afraid, but probably the blotchy one.  My flares seem to last years.

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    • Posted

      Hi Megan,

      I just wanted to share that the only thing that has helped me is Accupuncture and Chinese herbal medications for circulation. After 3 different doctors and 6 months of suffering with high doses of prednisone I had enough and went to a Chinese Accupuncturist. Within 2 weeks the rash/lesions stopped and now I only go twice a week and continue the herbs. I'm just having a hard time getting rid of the red/purple marks left behind. I wish you a speedy recovery as I feel your pain.

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