Patient Comments: Vasculitis - Diagnosis

How was your vasculitis diagnosed?

Comment from: jknowles, Published: September 26

I have recently been diagnosed with Vasculitis (I'm not sure which kind yet). It all started out with two random, low-grade fevers, and then tiny red dots started appearing on my legs. Those red dots turned into large, quarter size, red blotches that itched and throbbed. My joints began to swell as well as the bottoms of my feet to the point that I could not walk. I went to urgent care, and was immediately sent to the ER. Both urgent care and ER doctors told me that they thought it was lupus. Four doctors and a dermatologist appointment later, I still didnt have a diagosis until I had a biopsy of one of the lesions, and was diagnosed with vasculitis. I will be seeing my primary care doctor in a few weeks to see what may be causing this.

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Comment from: rachel, 35-44 Female (Patient) Published: June 11

I was diagnosed with vasculitis in 2008 following a holiday abroad. My legs were covered in a blotchy red itchy rash and heat in my feet was unbearable. The doctors abroad thought I was allergic to sand but once back in the UK I was seen immediately by a doctor who diagnosed vasculitus my blood tests confirmed his diagnosis. I was off work 6 months with this first attack with other symptoms such as heart palpitation, low blood pressure, exhaustion, and aching all over. I control it now with a dose of steroids, which seems to work well when things get bad. You can live with vasculitus, but you constantly feel older than your years. I've now learned that stress is my trigger and as soon as I see / feel the signs I have to slow down, which is frustrating as I'm a mother of three and also have a career that I'm trying to build.

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Comment from: sunflower, 75 or over Male (Caregiver) Published: March 29

My father, 78 years old, was diagnosed with vasculitis 3 years ago. He had been diagnosed with rheumatoid arthritis 8 years ago. About 3 years ago very small red spots appeared all over his legs, and he was feeling bad like he was catching a cold. His family doctor thought it was allergies. Then 10 days later he was feeling very bad, we took him to the hospital, and they diagnosed him with henoch schonlein, a type of vasculitis, and immediately put on prednisone. He had to stay at the hospital for seven days. Unfortunately the disease affected his kidneys and came back constantly and he has been on prednisone ever since. The medication has very bad side effects, like muscle damage, and now he is suffering from those as well. If you suspect vasculitis see a specialist immediately, this is a very serious disease!

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Comment from: JoanP, 13-18 Male (Caregiver) Published: March 16

My 13 yr old son came home from school with a rash on his legs and soreness. I brought him to Urgent Care that evening and they diagnosed him with Folliculitis. I wasn't sold on that after looking it up when we got home so I brought him to our Dermatologist in the morning. He diagnosed him with Vasculitis Henoch-Scholein Purpura. Told me to take him to our Pediatrician and get blood work done. He has been in pain from the swelling in his legs, hands, feet. Very bad stomach aches, and back pain. He's extremely tired and no appetite. He's lost 5 pounds in a week. They found a trace of blood in his urine and sent him for some more blood work. All blood work came back normal again but he has to be monitored for blood in urine and blood pressure. He has missed 7 days of school and I still don't know the course of this condition. I feel for whoever gets this; it is a very scary and frustrating disease.

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Comment from: wannabpainfree, 25-34 Female (Patient) Published: March 29

I am a 32 year old mother of two. I was just diagnosed with vasculitis after numerous trips to the emergency room. I have an appointment with a specialist next month. I have seen a family doctor, rheumatologist, and neurologist so far, and they all came to the same conclusion of vasculitis. I am in excruciating pain and the Gabapentin only takes the head off the pain. My feet have turned beet red and I can't walk. It is so bad that I am in physical therapy three times a week and use a walker. My doctors are also checking into some form of lymphoma. My kidneys hurt a lot, I have headaches, and my legs cramp.

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Comment from: Masiah27, 13-18 Female (Patient) Published: January 20

I'm sixteen years old and got diagnosed with vasculitis when I was 14. I was pregnant and starting getting this around my first trimester. First I didn't know what it was and thought i was allergic to something. It just is starting to get worse. It finally went away after I had my son. Now I'm scarred with this and doctors won't do anything for me.

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Patient Comments

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Vasculitis - Describe Your Experience Question: Please describe your experience with vasculitis.
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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