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.
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.
Se você foi devidamente testado, então eu imaginaria que isso incluiu hepatite C?
Existe uma proteína anormal no sangue que está associada ao vírus da hepatite C, mas também a várias outras doenças, a maioria delas com um componente subjacente 'autoimune'. Essa proteína é chamada de 'crioglobulina' e, quando presente na corrente sanguínea, causa 'chuveiros' de sintomas que, no meu caso, se manifestam como manchas vermelhas (petequias) que variam em tamanho, forma e intensidade da cor. As petequias geralmente são de alguma tonalidade de vermelho, mas também já experimentei roxo, sendo este último ocorrido no início deste 'processo de descoberta'/fase aguda. Essas manchas, no meu caso, parecem aparecer principalmente quando estou em pé/caminhando por longos períodos de tempo e, se eu trabalhar em um turno duplo, as manchas se multiplicam. No entanto, descobri que, simplesmente usando meias de compressão leve (18-22), minhas manchas são significativamente reduzidas. Você está certo sobre tentar marcar os surtos ou 'chuveiros' com uma consulta médica... é praticamente impossível. Geralmente, apenas documento com uma foto.
Espero que isso seja útil para você e para os outros também. Leia sobre 'crioglobulinemia' apenas para se familiarizar com uma variedade de situações que podem causar esse sintoma. Com todo o respeito aos nossos médicos de família por aí, esse tipo de situação geralmente é melhor gerenciado por um internista, em vez de um médico de família, pelo menos, e um especialista também, como um reumatologista - eles têm a expertise para lidar com situações de natureza 'autoimune'. Não tenho certeza sobre o metal em suas pernas, aliás... isso pode ter alguma influência. Não sou médica, mas sou enfermeira que viveu e lutou com isso por quase uma década e estou apenas compartilhando minha experiência pessoal.
Boa sorte!
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.
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.
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.
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.
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.
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.
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.