Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

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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Comment from: Blair, 55-64 Female (Patient) Published: November 25

I have had a biopsy done on my eye and it was determined that I had autoimmune vasculitis. If the inflammation exists somewhere else in my body and is showing up in my eyes, where could the inflammation be located! The only visible signs/indication that something is going on is the inflammation in my eyes; I don't know where/what is the root cause. I only suffer with bursitis in the really cold winter time but in spring, summer, fall I am not bothered with the pain at all. I am confused, tired and would like relief. I have slept well in years and am currently taking a sleep medication to sleep at all (prescription drug only).

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Comment from: M M, 55-64 Female (Patient) Published: November 06

I was really not sick the night just a little cough, I was sent to the hospital's normal ward. Four hours later I was in ICU with all the pipes and sedated for more than 14 days. My lungs collapsed, they say. I got vasculitis treated with prednisone for 5 weeks, but I have no treatment at the moment. I am very tired and I have small spots on ankles.

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Comment from: JLB, 45-54 Female (Patient) Published: May 05

I am a 53-year-old female that has been diagnosed with vasculitis (PAN). I was referred to a rheumatologist and am on prednisone and methotrexate, probably for two years. My symptoms were lesions on my legs, Reynaud's syndrome in my fingers and toes, fevers, muscle and joint pain, and fatigue. My doctor says the longer I am on treatment, the better my chances are for a long-term remission. I spent 10 months with one doctor before I tried an internist, who suggested right away that it might be vasculitis. I am grateful for the quick diagnosis.

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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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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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