Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: Jackie, 65-74 Female (Patient) Published: February 24

I have severe pain in joints and weight loss due to vasculitis. I have loss of appetite, I cannot bear the smell of food, night sweats and nasal problems. At the moment I have severe pain in feet only, they are also numb and feel very tight. I have had this for a year now not had this problem in my feet before.

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Comment from: tak2kuldeep, 3-6 Male (Caregiver) Published: August 06

My 5 years old son had Henoch–Schönlein purpura (HSP) as confirmed by the dermatologist; HSP with DIF (direct immunofluorescence) test with IgG positive. Doctor has administered Omnacortil syrup for almost 2 months and the HSP was controlled but to my surprise the symptoms are reoccurring after a period of almost 2 months.

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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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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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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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