Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: Mother J, 45-54 Female (Patient) Published: October 08

I was diagnosed with vasculitis, "scattered activation foci," and "significant temporal lobe asymmetry" of the brain after being bitten by hundreds of ticks in Oklahoma. Turned out, I had Lyme disease, Human Granulocytic Ehrlichiosis and Rocky Mountain Spotted Fever - yes, all at the same time. That was in 1994 and I'm still sick from time to time and my brain is still a mess. Early diagnosis and proper antibiotic treatment would have saved me all of this misery the past 19 years.

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Comment from: daughter, 19-24 Female (Caregiver) Published: July 18

I want to get the word out to everyone else out there that is going through having vasculitis. My mother was diagnosed about fifteen years ago. So she has been on prednisone for that long. recently she fell and did major damage to her spine and pelvic, She is only 53 and when they went into surgery the surgeon came out and said her bones are as fragile as a 90 year old woman because of being on steroids for so long. she ended up having to have five surgeries all together to get the placement just right. the surgeon also said anyway we could she needed to find an alternative to the steroid. So anyone on predinose please be sure and do bone density tests so you will not have to go through something like this. because i know vasculitis affects the lungs and going under was very hard for her lungs to recover. just a word of advice cause i know it is a rare disease and want to get out there any info i can share that might help someone else

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Comment from: TaraMed, 35-44 Female (Patient) Published: May 28

I'm wondering how to get tested for vasculitis. I'd also like to know about the symptoms. I get sharp pains in my head and have pain all over my body, especially in my upper back and chest. My calves cramp up and hurt. My fingers and feet fall asleep quite often.

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Comment from: Lynn, 75 or over Female (Caregiver) Published: April 19

My mother is 83 and has urticarial vasculitis, as I mentioned in a previous post. She was hospitalized 10 years ago, but the illness was not diagnosed. The rash over her body eventually went away of its own accord without steroid treatment, but she never felt fully well and was always catching infections, as her immune system must have been very low. Symptoms in her feet alternated between feeling as if they were wrapped in tissue paper to being bound in barbed wire. Sometimes she said they felt as if they had been set on fire. Mum also has anemia as well as arthritis. In Scotland where we live, there is an excellent website for vasculitis. The Lauren Currie Twilight Foundation for vasculits. They have many members from all over the world who suffer from all types of vasculitis and they also have a Facebook page. I hope you have a look and share your experience of this devastating illness. They are doing great work.

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Comment from: María, 19-24 Female (Patient) Published: April 15

I am 23 years old. My vasculitis is a consequence of an allergic reaction to some medication I was taking for a sore throat. Lots of really ugly spots started appearing all over my legs, until my legs and arms were paralyzed. I went to the ER and received a very heavy corticosteroid treatment. I have to take medication for about a month. I'd like to know if anyone else has gone through this, if there are any side effects, and how much time it will take for everything to be better.

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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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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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