Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: Windy, 55-64 Female (Patient) Published: February 19

I was diagnosed with Rheumatosis Arthritis about 10 years ago. I have been in remission for about 8 years. Recently, I had muscle pain in my left leg. It was much worse at night when I was resting and I would wake with the pain. This went on for several weeks. I went to doctor but they could not find anything. At the same time I had 4 what I thought were bladder infections, (one every 2 weeks), but although I had blood in my urine, I had no infection. (The bladder infections were treated with antibiotics.) The pain in my leg became nauseating and then I noticed a rash. I thought maybe it was shingles. I went to the ER, but doctor said no. I then went to see my own doctor who diagnosed PAN. The marks on my lower leg were a red rash with two dark red, larger spots on the front and one large dark red on the back of my leg. I am now on Prednisone and although the rash has cleared, I still have pain - like a bruised shin without the bruise although the muscle pain has ceased.

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Comment from: chapelin2000, 0-2 Female (Caregiver) Published: October 13

I have a 2 year old diagnosed with Vasculitis. On Sunday she woke up with a back pain on one side and it was kind of swollen so I ran to the ER. The DR. notice some tiny red spots from her knees down not her feet so I did not pay too much attention to the spots because she had fever the night before from a cold that she still has so I thought it was a reaction from that fever. We ended in the hospital for three days. The doctors could not find a diagnosis at that moment because she also had a few mosquito bites from playing in the park. For the doctors the most concern was the back pain so it resulted that she had UTI. When she was discharge the following day she had more red spots on her thighs an buttocks so on Wednesday I took to her pediatrician and suddenly she could not walk she was limping from one leg some x-ray was done and thank God the results were negative, but the pain was there she was prescribe Motrin for the pain. We have not experience the swelling on the ankles or other symptoms related to this condition, again it has only been a week. She also lost her appetite.

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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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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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