Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: Summer, 35-44 Female (Patient) Published: October 28

Over the past 12 years I have had recurring vasculitis. It starts with spots on feet, legs, arms and upper chest area. By day 3 I usually have excessive swelling of the feet and hands and cannot walk. I spend a couple of weeks in bed sleeping with fevers, tremors, sweats and migranes. I try to keep my body as cold as possible and stay out of the sun light. I take pro-biotics as well as prescribed Prednisone. This can last up to 2 months and sometimes if I overexert myself or become stressed it comes straight back and puts me out of action for another month. I am yet again recovering from another bout of vasculitis after traveling to Bali for a holiday. For anyone experiencing this form of vasculitis, please tell your story in case there is more that I can learn about controlling this nightmare.

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Comment from: Peter, 55-64 Male (Patient) Published: April 27

I get confusion; feeling like my head is in a vice, mild pressure in the head. I went to the emergency room not long ago; they put me on an IV and almost instantly everything cleared up. I could once again think clearly. I left and then found myself back in the emergency room all over again. Same results.

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Comment from: 45-54 Female (Patient) Published: April 23

My first time of experiencing vasculitis was when the tips of my fingers were swollen, blood red, extremely hot and painful. At first the doctor didn't quite know what to make of it, after tests came back it was diagnosed as vasculitis. I was treated with steroids and all went back to normal. The second time it occurred was in the front of my lower leg. The pain was so bad I felt like someone had hit me with a baseball bat and I couldn't walk. Again steroids were administered and all went back to normal. During these times, I had un unusual blood test on my liver. My leg is always tender and sometimes I find little sore like blisters on it. I also have SLE and a hypoactive thyroid.

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Comment from: cassiesmum, 35-44 Female (Patient) Published: February 19

I have vasculitis, its horrible illness; I cannot wear skirts, or shorts during the warm weather. The backs of my thighs, buttocks and face have sores/spots over them and they're really painful. At times my whole body is wrecked with pain and fever. My GP is not very helpful, I have begged for stronger pain medication, but I'm told no, because I'm still young? I would love to meet a more sympathetic Gp, any advice on how to find one, would be greatly appreciated. I also have Rheumatoid Arthritis.

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Comment from: Sailor, 19-24 Male (Patient) Published: February 19

I'm currently in the Navy and in November, I had this outbreak of red sores all over my face. I felt like a monster. The Navy doctors either didn't know and/or didn't care what it was. They sent me home with some anti-histamines and told me to drink plenty of water. It went away after about a week. It has come back about every two months or so since then. I was home for Christmas last week and I had another outbreak, so I decided to see a civilian doctor. He took one look at me and told me he was almost positive it was vasculitis. I am now awaiting the results from the biopsy.

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Comment from: Regsezheyo, 45-54 Male (Caregiver) Published: October 13

My husband was diagnosed with a brain infection, then stroke, then tumor. He is 47 years old and has had a major brain injury. There are now saying the MRI suggests vasculitis. He is at home and doing well after a coma, and Rehab hospital and the doctors still don't know what it was or is. Can vasculitis affect the brain?

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Comment from: Malcolm, 45-54 Male (Patient) Published: October 13

During a recent holiday abroad my toes on both feet seem badly bruised without being injured. The rest of my feet were mottled and then the skin began to crack open. The same has happened to my hands without the bruising. I am awaiting tests with a specialist. My doctor thinks it is urgent, but the first available appointment is 5th November. I also suffer a chronic disease called Hydradenitis Suppurative.

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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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