Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: cheche, 35-44 Female (Patient) Published: March 23

I have had vasculitis for almost 20 years now. In the last couple of years, it has gotten worse. I know what brings it on: drinking alcohol (which I like to do). Also, being tired and wearing high heels. My legs are now permanently scarred from all my breakouts, and I have to wear leg makeup if I want to wear shorts. It's no fun in the summer. I take prednisone for the inflammation I have from Sjogren's syndrome, but I do not take anything specific for the vasculitis. I tried colchicine many years ago, but it didn't help.

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Comment from: MyLegThing, 25-34 Female (Patient) Published: February 19

I'm doing research online about Vasculitis, and came across this site. I've had Vasculitis on/off for about 5 years now. It is really frustrating! It came on out of no where! I thought it was a skin rash at first (on my feet, ankles, legs) but after going to a few different doctors (dermatologists and my main doctor) I found out it was Vasculitis. It is just so strange, and annoying! I've noticed over the years that different things bring it on, such as drinking alcohol (even just 1-2 drinks), stress, even shaving my legs sometimes seems to affect it! I've tried to pin-point what exactly causes it, but it seems these things are the main causes. I've just started taking Dapsone for it, but it hasn't seemed to help much so far. I wish I had more info to say here. I'm just as baffled as everyone else on how to treat this - it'd be nice to be able to wear shorts/dresses! I'll share more info if I found something that seems to cure it!

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Comment from: Maria, 55-64 Female (Patient) Published: February 03

My mom is 63 years old and she is currently in the hospital. She has been in an ICU for 25 days. She was diagnosed with vasculitis. I am her daughter, and I don't know much about this condition, but I am very scared. She went into the hospital with shortness of breath and in 24 hours she had all sorts of IVs and tubes hanging everywhere. That's when they told us she could die. Her lungs were filled with blood and it was very hard for her to breathe. She is still here fighting this disease.

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Comment from: Amy, 25-34 Female (Patient) Published: December 18

I have been living with allergic vasculitis for almost 13 years now. I have tight, itchy, swollen legs and feet. It's really horrible because after an episode, I can barely walk. I can't wear shorts or dresses; it's miserable. I've been on prednisone and azathioprine, and neither has worked very well. I don't know what else to do.

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Comment from: Donna, 65-74 Female (Caregiver) Published: November 25

My mom has just died from cerebral vasculitis, and she was only 65. They thought she had encephalitis, but it was actually this cruel disease. She knew there was something wrong. She would grab her head and cry out with the pain. We lost her within two weeks of going into the hospital for something completely unrelated. She had massive brain hemorrhages and was pronounced brain dead. She also suffered from rheumatoid arthritis, and the doctors tell me this is a contributing factor. I can't help but think that if they'd discovered it earlier, she might still be here.

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Comment from: Kalia, 25-34 Female (Patient) Published: November 25

I have vasculitis, and when I have an episode, the swelling, itchy, very-tight skin hurts to touch. I can't walk for weeks at a time, sometimes a month. It is so painful. I am not able to walk for long distances or sit for long periods of time either. I am just not able to do the things I wants was able to do, such as tennis, walks on the beach, running with my dog, bowling, etc., Living with vasculitis is just a nightmare!

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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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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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