Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: harry, 55-64 Male (Patient) Published: May 05

My father has vasculitis, but it is not clear exactly what type he has. His case has been ambiguous from the start. He was a typically healthy adult male, but that changed two years ago. His condition began with tingling in his fingers to burning on the bottom of his feet. As time progressed, nodules were found in his lungs. After subsequent tests/operations, such as an open lung biopsy and needle biopsy, he was diagnosed. (The biopsies came out non-specific so the doctors deemed the nodules irrelevant to the disease as a whole). On the bright side, his organs have not been affected by this disease. As of right now, he is no longer in the hospital, but he still has some of his old problems. He is still disabled despite continued physical therapy and medicine (although he stopped the cyclosporin in August after discovering it was adversely affecting his kidneys).

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Comment from: Lady369, 35-44 Female (Patient) Published: April 27

I am a 40 year old single mother of three. I was diagnosed with Vasculitis more than a year ago. I was 36 years old when my symptoms first started. At first I thought I had two small pimples inside my nostrils. During the night, I woke up to a swollen nose. When the sun came up, any kind of light hurt my head. I was sluggish and achy all over. I went to the hospital and they gave me some medication to fight, what they called, an infection in my nose. Over the course of three days, my condition worsened. I couldn't walk without assistance, I couldn't open my eyes nor could I smell anything. Another three or four days passed, the glands under each armpit were so inflamed I couldn't put my arms down. My head hurt so bad I had to be taken to the hospital. In a matter of 10 days, I was in the hospital have CT Scans, MRIs, blood draws and a spinal tap. I was misdiagnosed five times at first. After the hospital visit, I was no longer able to use my legs. My son had to help me up and down the stairs and in and out of the bathtub. My legs had given out on me that I ended up using a walker for four months. No one could figure it out. I went to a number of specialists until I finally was referred to a rheumatologist. I go every six months now. It's been a rough time for me, but actually I forgot I was diagnosed with the disease. I guess I was in denial. I've been feeling sluggish and feverish; can barely get up to go to work some mornings. I just thought I wasn't getting enough rest because I travel so much. Well, I've also been under a lot of stress. My rheumatologists told me my symptoms of me being tired lately is because of the vasculitis. Only my left leg hurts, or feels restless most times. My ankle swells up and I started seeing small bruises show up on my legs. I guess since I'm new to this, I would love to find out is there a cure for this disease.

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Comment from: Gina, 35-44 Female (Patient) Published: April 23

I have got Vasculitis (Henoch-Purpura Schonlein). For nearly a year now it started of with a bite on my foot which got a lot of blisters, then the rash increased to my legs, arms, face and so on. My legs were swollen and sore. My husband had to take me to the Hospital because of the pain. I was under one Doctor who was no use so again my Husband looked for a second opinion. This time a Doctor who understood what I have. I had been on the Prednisone and other high doses of Medication and have very bad side effects, blue hands, fingers mouth. This is not good. This condition has affected my kidneys, and I get bad headaches. At this point now my doctor does not know when or if this will ever go away. She thinks I could have this forever, as normally it is only a short term condition. Even now I still get outbreaks on my legs, arms, and my legs itch so bad. The Doctors think that my Vasculitis was caused by a virus not the bite.

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Comment from: stevs, 45-54 Male (Patient) Published: March 23

My problem started as a tingling of the toes. As six months went by, the pain increased monthly until it felt like someone had poured gasoline on my feet. My doctor had no idea what the problem was. I went to a neuroscience institute where they gave me a biopsy of the calf muscle and foot nerve. It came back as positive for vasculitis. I took 12 months of cytoxin and prednisone. These lessened the pain, but the pain never went away totally in my feet. A second biopsy determined the vasculitis was in remission. I was finally weaned off the prednisone after two years, but I'm still taking oxycontin and gabapentin, which only take the edge off the pain. They now continue to look for ways to stop the pain, but I'm so tired of the constant pain in my feet.

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Comment from: akaylee, 55-64 Female (Patient) Published: March 12

My symptoms came on rather suddenly with cramping in my legs on a Wednesday evening. The pain increased to the point that I could not sleep well that night. It improved some on Thursday with some relief with aspirin treatment. Then it continued through the week and on Sunday I developed a red lacy rash that covered my legs to my hips and by Monday I had some on my arms. Severe pain continued in my lower legs. Tuesday I went to the doctor and he did blood work to check white cell count and electrolytes with that all coming back perfect. He decided to call it Vasculitis and is treating me with 60 mg of Prednisone one time a day for 5 days. The pain improved very quickly and the rash changed to a red prickly rash just on my calves. I'm waiting to see what happens at the end of the Prednisone treatment.

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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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