Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: Segbert, 45-54 Female (Patient) Published: June 14

Like everyone I was googling vasculitis neck pain to learn if it is a symptom. I was diagnosed 3 years ago by a skin biopsy, with urticaria vasculitis. My initial symptom was a cough I could not get rid and later I had 3 bites on my legs that quickly exploded. They became blisters from large itchy welts. I got them in the armpit and upper thigh. The blister would leave ugly black marks. I would get a large welt that moved around my face, neck and legs. The welt will start to burn and a blister will develop. I finally found an allergist that suggested a new medication that was FDA approved. It's a monthly injection called Xolair. I have been in remission for two years now. However, I'm concerned about the neck pain as initially I do recall getting them before a flare-up. I also remember a period before the coughing, having numb toes with tingling sensation as some had mentioned. I thought it was from standing for a long period. Regardless, Xolair got me off the prednisone and I hope neck pain is caused by something else. Also, I found Advil may have triggered my flare-ups. I only take Tylenol.

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Comment from: Lupie, 45-54 Female (Patient) Published: June 05

I've had these rashes on my hands and feet for years. Many diagnoses and prescribed a cream that I could only use sparingly because it makes your skin thinner. I saw my rheumatologist last week and I guess it was the first time he had seen my hands that bad. He said it was vasculitis and that I had to go on Cellcept, an anti-rejection drug. I've had lupus since I was in my late 20s but had symptoms for years before that. This is just one more diagnosis since I have lupus. I'm scared to take the Cellcept because of the dangerous reactions. My hands and feet are the only things I have the rash on. Yes, it itches and burns and my skin peels constantly. Gross! I just feel like a toxic waste dump and don't want to put any other drugs in it. Besides, I just can't afford it. I wish you all well in your journey with this disease.

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Comment from: Andy, 25-34 Female (Patient) Published: April 11

I'm 34 years old I was diagnosed with vasculitis a month ago. Initially I felt a tingling feeling on my toes then as days went by it was itchy and on day 4 I developed red patches on my legs. The 5th day I had body pain from legs to my body (nonstop pain even with paracetamol or mefenamic acid) and tingling feeling all over my body (all day/night). Then 6th day the doctor told me its vasculitis. Over the week I had tests from lupus to kidney, lungs and hepatitis. Thank goodness all tests came back negative. Except I have urinary tract infection (UTI). I was only given Gabix for muscle and joint pains but after 4 to 5 days with it, pain is bearable so I stopped taking it. Now I'm better but I usually have cold hands and feet, sometimes I feel a bit muscle pain and a bit tingling feeling in my legs and arms. I'm just wondering how this will last. It's not really painful but it's bothering.

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Comment from: Bookworm, 65-74 Female (Patient) Published: December 30

I had chronic hepatitis C which went undetected for over 20 years. While undetected I had itchy, painful rashes/open sores around my vagina from time to time which only swimming in salt water could relieve. I was misdiagnosed from herpes to goodness knows what. I also had flare-ups on my arms - elbows and lower arms. I self-treated the itch and rash. It was very itchy, especially at night. Finally a specialist did a biopsy on my arm and was very surprised with the findings of vasculitis. The diagnosis led my general physician to do blood tests which resulted in my hepatitis C diagnosis. I was fortunate to trial a new drug along with the standard ribavirin and injections weekly, all in all 7 drugs a day for 6 months; what a terrible experience! At the end of the horrendous treatment I was pronounced cured and no flare-ups of vasculitis on my arms or anywhere else. What a relief! Two years down the track, I know the vasculitis damage is still there because occasionally I get one patch break out on my elbow and sometimes small bleeds under my skin on my arms. This only occurs when I have a glass of wine, so my vasculitis developed over a long time frame due to a pre-1992 blood transfusion, when blood was not screened at that time. The damage has been done. My only other two symptoms are very aching joints from time to time and fatigue all the time which I manage and still achieve heaps; lots of exercise, etc. All in all, a ghastly repercussion of hepatitis C and ongoing forever I suspect.

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Vasculitis - Diagnosis Question: How was your vasculitis diagnosed?
Vasculitis - Treatment Question: What kinds of treatment did you receive for your vasculitis?
Vasculitis - Symptoms Question: What symptoms did you experience with vasculitis?
Vasculitis - Causes Question: What were the causes of your case of vasculitis?

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