Patient Comments: Vasculitis - Diagnosis


How was your vasculitis diagnosed? Submit Your Comment

Comment from: Mellow Yellow, 45-54 Female (Patient) Published: August 21

I've been to my primary doctor and I had a positive ANA test. I have a rash on my lower legs, thighs, and bottom, very sensitive to bright light, and have the runs off and on. I can barely walk on my feet because they are swollen and on fire, and my legs and hands are falling asleep every night. The odd thing is all my blood work is coming back high but within normal range so the rheumatologist won't help me until my blood work comes back from the medical center with their review. Lost and frustrated!

Comment from: Katelle, 35-44 Female (Patient) Published: June 05

Skin biopsy confirmed leukocytoclastic vasculitis, suspected as secondary to Churg-Strauss.

Comment from: Harini, 45-54 Female (Patient) Published: May 22

I am a female, 45 years old. I took vasculitis profile test 3 and it came positive. PM/Scl positive 13, c-ANCA PR3 positive, ESR 31, antinuclear antibody positive, and RFT is 20. I am not able to stand for more than 5 minutes, and I have walking difficulties.

Comment from: JB, 35-44 Female (Patient) Published: June 15

I was diagnosed after about 11 plus blood tests with vasculitis. I noticed after standing hours at a time my leg would appear with reddish marks. I went to see a rheumatologist and was sent back because the initial visit I was about 25 and he told me I was too young, and to come back years later if the problem persists. Years later the problem worsened and that's when the tests were done. I was given hydroxychloroquine, and it works! Take it before bed with a pain aid and it helps with skin appearance.

Comment from: bamagirl, 45-54 Female (Patient) Published: March 15

I was diagnosed with vasculitis after spending 4 months of doctor appointments to see what was causing the blisters and lesions on my feet and legs. I also have pain and swelling in my feet and legs and a very bad itch.

Comment from: Sfisher1975, 55-64 Female (Patient) Published: November 16

I had two different biopsies to find my vasculitis. One on my hip the other on my ankle.

Comment from: searching, 55-64 Male (Caregiver) Published: December 01

After many blood tests, muscle studies and many doctor visits, he finally had a muscle biopsy done to his calf muscle and it was determined he has vasculitis.

Comment from: DONeal, 55-64 Female (Patient) Published: April 21

I was diagnosed by a vascular surgeon who knew that the vein bursts, of which I've had many, are caused by vasculitis. It started in right hand, with pain and numbness of fingers, and spasms that woke me up while I was trying to sleep. The lack of sleep made my lupus worse and I felt myself going a little crazy. Having a diagnosis helps but this is my 4th month and I'm wearing out. The pain and fatigue are awful.

Comment from: River girl, 65-74 Female (Patient) Published: July 08

I was diagnosed with vasculitis after an ANCA blood test. I don't have any of the symptoms which they asked me, so I'm really questioning whether I have the disease or not. I’ve been reading about this for over an hour and see nothing else that points to vasculitis. They want to start me on prednisone and methotrexate. I'm really scared. No biopsy was done.

Comment from: Neeru, 45-54 Female (Patient) Published: April 11

I am a 46-year-old female that has been diagnosed with vasculitis polyarteritis nodosa (PAN). My symptoms were lesions on my legs, Raynaud"s syndrome in my fingers and toes, fevers, muscle and joint pain, and fatigue. My doctor says the longer I am on treatment, the better my chances are for a long-term remission. I tried an internist, who suggested right away that it might be vasculitis. I am grateful for the quick diagnosis.

Comment from: VCaruso, 35-44 Female (Patient) Published: February 12

I was misdiagnosed for weeks by my general doctor. I had itchy bumps that felt like my skin was on fire all over my feet, legs, arms and body. They thought I had an allergic reaction and told me to wash everything, stop using any new shampoo, soap, or lotions, and take antihistamines. A doctor who practices both western and eastern medicine took a look at my tongue and skin and said I had vasculitis. He said avoid MSG (monosodium glutamate) and that it was a kind of auto immune disease. He gave me some herbs to restore my immune balance and it went away in a week. I was so amazed I feel I had to share my story in case it could help someone.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: Vicki, 25-34 Female (Patient) Published: October 31

I am 30. I had pain in my legs and a rash on my upper legs. A few days later, my legs, feet, arms, hands, palms were swollen and the rash spread to all of the above limbs. The soles of my feet started to itch like crazy, and my legs just a little bit. I ended up in hospital. Received Steroids and Cortisone. Had a skin biopsy done. They diagnosed me last Thursday with Urticarial Vasculitis. They don't know what causes it and they told me they probably never will. It is difficult to treat because of all the side effects of the medications. I take two antihistamine tablets in the morning and two at night. By end of December they are going to stop my meds and see if I have an outbreak again. The episode went on for a week before I got better. It is not nice...

Comment from: Kim, 45-54 Female (Patient) Published: August 20

I have had a variety of symptoms for years and no doctor could figure out what was wrong with me. Partly because they never appeared all at the same time. Two years ago I had my large intestine taken out because it would not work well enough to eliminate properly. Now I am wondering if I needed the surgery. I have had joint and tissue pain, extreme fatigue which I was always told it was from be anemia. I have finally been diagnosed with the vasculitis and am now on the cancer drug, steroids and folic acid. At the present time I am having joint pain, fatigue and my inflammation levels are still between 9 and 12, with my doctor wanting them to be much lower.

Comment from: mal, 19-24 Female (Patient) Published: May 23

I was diagnosed with vasculitis summer 2013. It first appeared as tiny red dots on my legs. I thought it was a heat rash. I noticed if I stand too long, usually about five hours, I would break out bad and the dots would be more like splotches and they would itch and tingle. Stress also doesnt help or stimulants of any kind. Sometimes I get really achy in my legs and really tired. If I don't stand much for a couple days they disappear and my legs look normal. I'm on colchicine. This medicine has helped my breakouts be less horrible but doesnt prevent it so far. I've been on it for a year and it has made me sick with fever symptoms twice. I honestly hate this medicine. My primary doctor says it should go dormant in me after a couple years from my body making new proteins and I'm hoping that's the case. I'm trying to make my diet healthier to try and restore my pH balance, but it's hard when I love pop and pizza. My doctors have no idea why I have it. All my blood work and urine tests came out normal every time. They say I have hypersensitivity vasculitis but I don't know what's causing it. I did have a party phase after high school where I did a fair amount of MDMA and abused Vyvanse and Adderall to stay awake for college studying. I will never do that again and encourage anyone my age not to experiment in amphetamines. My doctors said that didn't cause it so I'm not sure. I wish the best for everyone else who battles this disease. It's hard for people to understand what I'm going through.

Comment from: Florida Girl, 35-44 Female (Patient) Published: March 07

I am 38 years old. About a month ago I had a burning sensation on my right lower ankle, kind of itchy. It was at the end of the day at work. When I got home I removed my socks and I had a light red rash forming on my right foot. By the next morning it was going up my ankle and was on my left leg. Within a week I had dark purple red areas on my legs from my shins down, with tiny blisters. I went to the ER they said I had vasculitis and to follow up with my doctor on Monday. Well i have been on Prednisone for 2 weeks. Once I got to the 10 mg Prednisone I noticed the rash starting back just like it did the first time. I have been off work three weeks total; now off for another three weeks per my doctor. Seeing internal medicine doctor this week to see if they know what is going on with me. All my labs and biopsy has come back normal. Don't know what to do now. If this keeps occurring I will not be able to work. I have vascular neuropathy in my left lower leg from the vasculitis now, what it will do if it continues.

Comment from: Illinois Boy, 25-34 Male (Caregiver) Published: October 15

My son age 26 was recently diagnosed with this ugly vasculitis. It started with a stomach ache and he also had stiff knees where it hurt to bend his knees or to walk. The swelling started with an IV in his right arm then to both arms, both hands, and both feet. One foot looked like a monster foot then the rash started on his feet to both of his legs then to the arms and elbows and buttocks. He had a very heavy red rash. After numerous blood tests and x-rays his doctor sent him to a dermatologist and he did a biopsy of the elbow and buttocks and the pathologist said he had vasculitis. He is on a oral steroid and he is still miserable. He has missed 3 weeks of work and we are hoping that this goes away and is in no more pain.

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.

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!

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.

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.

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.

Comment from: Nita Foeva, 19-24 Female (Patient) Published: July 20

At the end if April 2011 I was diagnosed with vasculitis the disease attacked my kidneys and my lungs. I spent 2 1/2 weeks in the ICU. I have been home for a month. My kidney level is 4.1, not getting much better. I am continuing chemotherapy treatments. My lungs filled with blood and were damaged but are getting better. This is a disease I will always have embracing it is the only way to live. That and praying that this chemotherapy treatment works.

Comment from: Anne-Marie, 55-64 Female (Patient) Published: July 11

I was diagnosed with vasculitis by having a biopsy in 2 areas on my upper arm where inflammation of the skin was most prominent.

Comment from: sunshine, 13-18 Female (Patient) Published: May 02

I am 18 years old and I am suffering from vasculitis. I started getting joint pain in the small joint of my hands and feet in the year 2007. I was hospitalized many times because of my critical it was unbearable. I've been on prednisolone and in 2009 my doctor started me off on cyclophosphamide. I will be on those medications for a while. Ever since this have started my life was never the same, it has affected my everyday living.

Comment from: Amanda, 25-34 Female (Patient) Published: August 17

I was diagnosed by a dermatologist. After begging my doctor to send me to specialists for approximately four months I finally saw a fantastic dermatologist who took one look and knew straight away what I had - it was such a relief.

Comment from: bonnie, 55-64 Female (Patient) Published: January 19

I was diagnosed finally with vasculitis. I would like to know why mine nearly always starts with severe headaches and large clumps of lesions on my head and ears.