Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

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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Comment from: loristrickland, 45-54 Female (Patient) Published: April 11

About a year ago after running a temperature for about 3 weeks, I went to the emergency room. I had a rash on both legs but also had back surgery about 4 months before that. I was admitted, stayed for 5 days, but they couldn"t find the reason. I went home and the fever stopped, then one day I had a call asking me to see my family doctor. He said the results showed lupus and sent me to a rheumatologist for a 2nd lupus test which was negative. The doctor said it was vasculitis. She put me on prednisone, but no relief. I also have fibromyalgia, anyway my feet every day have been burning and hurting. Yesterday my legs began to burn and itch, today they have a rash and the pain feels like fire ant bites.

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Comment from: LIZ, 55-64 Female (Patient) Published: March 27

I have had systemic lupus for several years. In the last two years I have had episodes where my hemoglobin and iron level drop drastically over a three to four month period. I have had blood transfusions and infusions of iron then my levels go back up. I have had three colonoscopies, three endoscopies and two capsular endoscopies. The gastroenterologist said I had some inflammation in my lower bowel. I have also been seeing a hematologist who says my blood loss appears to be a gastrointestinal (GI) bleed. My rheumatologist is exploring the possibility of vasculitis.

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Patient Comments

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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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