Patient Comments: Vasculitis - Describe Your Experience


Please describe your experience with vasculitis. Submit Your Comment

Comment from: Aarcha , 19-24 Female (Patient) Published: May 10

I was diagnosed with leukocytoclastic vasculitis (LCV) back in June 2016. I had symptoms including back pain, joint pain, swollen soles, and red rashes. Ever since the last 2 years I have been taking steroids and other immuno-suppressive medicines. The intensity of my symptoms have decreased to a great level. I advise people who have vasculitis to take proper Medicare.

Comment from: Lynette, 55-64 Female (Patient) Published: January 17

October 2016 I was diagnosed with hypocomplementemic urticarial vasculitis (HUV) caused by insect bites. I had necrotic lumps and swelling soles of feet to knees, large hives from top of head to ankles, extreme pain that moved from left side of neck slowly around to right side of head (not a headache), limited head movement, my eyes were affected, had pain in right kidney, and lethargy. Eventually it was diagnosed by the general physician as allergic vasculitis then HUV by specialist vasculitis clinic. I had 12 months of medications before finally feeling better. Fifteen months later, I am still on 5 mg prednisolone and 400 mg hydroxychloroquine daily along with other managing medications.

Comment from: Dale, 55-64 Male (Patient) Published: January 12

My first vasculitis episode involved swollen feet with red spots. I became very tired. At the time I did not know what was causing my problems. A series of tests showed very high eosinophils, I was put on a prednisone taper, and felt better quickly. I have been diagnosed with Churg-Strauss syndrome, and have had some intestinal flares. I manage now with 10 mg of prednisone daily.

Comment from: TAKsurvivor, 65-74 Female (Patient) Published: May 04

I was diagnosed with Takayasu's arteritis about 12 years ago. It was quite severe and I have had multiple hospitalizations and many manifestations of the disease including severe headache, faintness, weakness, pain, inability to walk, stroke, etc. The first two years I spent 245 days in the hospital and was sent to two major medical centers. One of them repaired and cleaned some arteries. By comparison, I am doing well, but am not leading the life I envisioned for myself. I can walk a bit; I take my dog for walks of about one block. I need to rest frequently, and cannot do any heavy household work. I keep going with my faith, music and my animals. I would prefer a more active life, but at least I am alive and kicking (and sassy)!

Comment from: Ng11442, 25-34 Female (Caregiver) Published: December 20

My sister started with red spots on her legs and feet over a couple of days after her feet started turning purple kind of like bruising. She was diagnosed with lupus and vasculitis. And she gets excruciating pain and burning on her feet. She has been on prednisone and Plaquenil for over 4 months, the pain is still there and feet are still bruised!

Comment from: shim , 19-24 Female (Patient) Published: October 05

I was 18 or 19 years old when I first got the rashes from vasculitis on my legs. There were just small dots when it appeared for the first time. Since last year the rashes started to spread and it became worse day by day.

Comment from: Yogibear, 45-54 Female (Patient) Published: June 19

I was found to have vasculitis on my cervix which has now been removed but I don’t know if it’s anywhere else in my body. My blood test come back high but all my doctor keeps saying is we will repeat them in a month’s time. I have had a cough now for 2 weeks, feel really tired and my body aches. I feel my doctors are not taking it seriously and I am worried.

Comment from: Morris minor , 45-54 Female (Patient) Published: May 01

I have lumps in my forearms to and beyond the elbow that appear to follow veins and arteries. I also have a red rash on my left foot and above the inside of my ankle. For two years I have had pain in the left side of face which has affected my left eye slightly. I have constant head pain on left side and sometimes swelling on left side of head. I have pain when eating due to jaw pain, especially when food is hot! Previous blood tests did not show high ESR. I have just had more blood tests. I am constantly tired and have joint pain and tingling in hands plus ringing in ears. Doctors have not really taken my concerns about vasculitis seriously so am feeling quite low about all this at present.

Comment from: Patrick, 65-74 Male (Patient) Published: November 07

My vasculitis started with a sore throat and progressed to severe muscle pain in legs, buttocks, back and arms, night sweats and fatigue, having to rest my arm when cleaning my teeth. Solution was prednisolone and cyclophosphamide and other support medications.


Arthritis: 16 Bad Habits That Cause Joint Pain See Slideshow
Comment from: Segbert, 45-54 Female (Patient) Published: June 14

Like everyone I was googling vasculitis neck pain to learn if it is a symptom. I was diagnosed 3 years ago by a skin biopsy, with urticaria vasculitis. My initial symptom was a cough I could not get rid and later I had 3 bites on my legs that quickly exploded. They became blisters from large itchy welts. I got them in the armpit and upper thigh. The blister would leave ugly black marks. I would get a large welt that moved around my face, neck and legs. The welt will start to burn and a blister will develop. I finally found an allergist that suggested a new medication that was FDA approved. It's a monthly injection called Xolair. I have been in remission for two years now. However, I'm concerned about the neck pain as initially I do recall getting them before a flare-up. I also remember a period before the coughing, having numb toes with tingling sensation as some had mentioned. I thought it was from standing for a long period. Regardless, Xolair got me off the prednisone and I hope neck pain is caused by something else. Also, I found Advil may have triggered my flare-ups. I only take Tylenol.

Comment from: Lupie, 45-54 Female (Patient) Published: June 05

I've had these rashes on my hands and feet for years. Many diagnoses and prescribed a cream that I could only use sparingly because it makes your skin thinner. I saw my rheumatologist last week and I guess it was the first time he had seen my hands that bad. He said it was vasculitis and that I had to go on Cellcept, an anti-rejection drug. I've had lupus since I was in my late 20s but had symptoms for years before that. This is just one more diagnosis since I have lupus. I'm scared to take the Cellcept because of the dangerous reactions. My hands and feet are the only things I have the rash on. Yes, it itches and burns and my skin peels constantly. Gross! I just feel like a toxic waste dump and don't want to put any other drugs in it. Besides, I just can't afford it. I wish you all well in your journey with this disease.

Comment from: Andy, 25-34 Female (Patient) Published: April 11

I’m 34 years old I was diagnosed with vasculitis a month ago. Initially I felt a tingling feeling on my toes then as days went by it was itchy and on day 4 I developed red patches on my legs. The 5th day I had body pain from legs to my body (nonstop pain even with paracetamol or mefenamic acid) and tingling feeling all over my body (all day/night). Then 6th day the doctor told me its vasculitis. Over the week I had tests from lupus to kidney, lungs and hepatitis. Thank goodness all tests came back negative. Except I have urinary tract infection (UTI). I was only given Gabix for muscle and joint pains but after 4 to 5 days with it, pain is bearable so I stopped taking it. Now I’m better but I usually have cold hands and feet, sometimes I feel a bit muscle pain and a bit tingling feeling in my legs and arms. I’m just wondering how this will last. It’s not really painful but it’s bothering.

Comment from: Bookworm, 65-74 Female (Patient) Published: December 30

I had chronic hepatitis C which went undetected for over 20 years. While undetected I had itchy, painful rashes/open sores around my vagina from time to time which only swimming in salt water could relieve. I was misdiagnosed from herpes to goodness knows what. I also had flare-ups on my arms - elbows and lower arms. I self-treated the itch and rash. It was very itchy, especially at night. Finally a specialist did a biopsy on my arm and was very surprised with the findings of vasculitis. The diagnosis led my general physician to do blood tests which resulted in my hepatitis C diagnosis. I was fortunate to trial a new drug along with the standard ribavirin and injections weekly, all in all 7 drugs a day for 6 months; what a terrible experience! At the end of the horrendous treatment I was pronounced cured and no flare-ups of vasculitis on my arms or anywhere else. What a relief! Two years down the track, I know the vasculitis damage is still there because occasionally I get one patch break out on my elbow and sometimes small bleeds under my skin on my arms. This only occurs when I have a glass of wine, so my vasculitis developed over a long time frame due to a pre-1992 blood transfusion, when blood was not screened at that time. The damage has been done. My only other two symptoms are very aching joints from time to time and fatigue all the time which I manage and still achieve heaps; lots of exercise, etc. All in all, a ghastly repercussion of hepatitis C and ongoing forever I suspect.

Comment from: Jackie, 65-74 Female (Patient) Published: February 24

I have severe pain in joints and weight loss due to vasculitis. I have loss of appetite, I cannot bear the smell of food, night sweats and nasal problems. At the moment I have severe pain in feet only, they are also numb and feel very tight. I have had this for a year now not had this problem in my feet before.

Comment from: tak2kuldeep, 3-6 Male (Caregiver) Published: August 06

My 5 years old son had Henoch–Schönlein purpura (HSP) as confirmed by the dermatologist; HSP with DIF (direct immunofluorescence) test with IgG positive. Doctor has administered Omnacortil syrup for almost 2 months and the HSP was controlled but to my surprise the symptoms are reoccurring after a period of almost 2 months.

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

About a year ago after running a temperature for about 3 weeks, I went to the emergency room. I had a rash on both legs but also had back surgery about 4 months before that. I was admitted, stayed for 5 days, but they couldn"t find the reason. I went home and the fever stopped, then one day I had a call asking me to see my family doctor. He said the results showed lupus and sent me to a rheumatologist for a 2nd lupus test which was negative. The doctor said it was vasculitis. She put me on prednisone, but no relief. I also have fibromyalgia, anyway my feet every day have been burning and hurting. Yesterday my legs began to burn and itch, today they have a rash and the pain feels like fire ant bites.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: LIZ, 55-64 Female (Patient) Published: March 27

I have had systemic lupus for several years. In the last two years I have had episodes where my hemoglobin and iron level drop drastically over a three to four month period. I have had blood transfusions and infusions of iron then my levels go back up. I have had three colonoscopies, three endoscopies and two capsular endoscopies. The gastroenterologist said I had some inflammation in my lower bowel. I have also been seeing a hematologist who says my blood loss appears to be a gastrointestinal (GI) bleed. My rheumatologist is exploring the possibility of vasculitis.

Comment from: Blair, 55-64 Female (Patient) Published: November 25

I have had a biopsy done on my eye and it was determined that I had autoimmune vasculitis. If the inflammation exists somewhere else in my body and is showing up in my eyes, where could the inflammation be located! The only visible signs/indication that something is going on is the inflammation in my eyes; I don’t know where/what is the root cause. I only suffer with bursitis in the really cold winter time but in spring, summer, fall I am not bothered with the pain at all. I am confused, tired and would like relief. I have slept well in years and am currently taking a sleep medication to sleep at all (prescription drug only).

Comment from: M M, 55-64 Female (Patient) Published: November 06

I was really not sick the night just a little cough, I was sent to the hospital’s normal ward. Four hours later I was in ICU with all the pipes and sedated for more than 14 days. My lungs collapsed, they say. I got vasculitis treated with prednisone for 5 weeks, but I have no treatment at the moment. I am very tired and I have small spots on ankles.

Comment from: JLB, 45-54 Female (Patient) Published: May 05

I am a 53-year-old female that has been diagnosed with vasculitis (PAN). I was referred to a rheumatologist and am on prednisone and methotrexate, probably for two years. My symptoms were lesions on my legs, Reynaud’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 spent 10 months with one doctor before I tried an internist, who suggested right away that it might be vasculitis. I am grateful for the quick diagnosis.

Comment from: harry, 55-64 Male (Patient) Published: May 05

My father has vasculitis, but it is not clear exactly what type he has. His case has been ambiguous from the start. He was a typically healthy adult male, but that changed two years ago. His condition began with tingling in his fingers to burning on the bottom of his feet. As time progressed, nodules were found in his lungs. After subsequent tests/operations, such as an open lung biopsy and needle biopsy, he was diagnosed. (The biopsies came out non-specific so the doctors deemed the nodules irrelevant to the disease as a whole). On the bright side, his organs have not been affected by this disease. As of right now, he is no longer in the hospital, but he still has some of his old problems. He is still disabled despite continued physical therapy and medicine (although he stopped the cyclosporin in August after discovering it was adversely affecting his kidneys).

Comment from: Lady369, 35-44 Female (Patient) Published: April 27

I am a 40 year old single mother of three. I was diagnosed with Vasculitis more than a year ago. I was 36 years old when my symptoms first started. At first I thought I had two small pimples inside my nostrils. During the night, I woke up to a swollen nose. When the sun came up, any kind of light hurt my head. I was sluggish and achy all over. I went to the hospital and they gave me some medication to fight, what they called, an infection in my nose. Over the course of three days, my condition worsened. I couldn't walk without assistance, I couldn't open my eyes nor could I smell anything. Another three or four days passed, the glands under each armpit were so inflamed I couldn't put my arms down. My head hurt so bad I had to be taken to the hospital. In a matter of 10 days, I was in the hospital have CT Scans, MRIs, blood draws and a spinal tap. I was misdiagnosed five times at first. After the hospital visit, I was no longer able to use my legs. My son had to help me up and down the stairs and in and out of the bathtub. My legs had given out on me that I ended up using a walker for four months. No one could figure it out. I went to a number of specialists until I finally was referred to a rheumatologist. I go every six months now. It's been a rough time for me, but actually I forgot I was diagnosed with the disease. I guess I was in denial. I’ve been feeling sluggish and feverish; can barely get up to go to work some mornings. I just thought I wasn't getting enough rest because I travel so much. Well, I’ve also been under a lot of stress. My rheumatologists told me my symptoms of me being tired lately is because of the vasculitis. Only my left leg hurts, or feels restless most times. My ankle swells up and I started seeing small bruises show up on my legs. I guess since I’m new to this, I would love to find out is there a cure for this disease.

Comment from: Gina, 35-44 Female (Patient) Published: April 23

I have got Vasculitis (Henoch-Purpura Schonlein). For nearly a year now it started of with a bite on my foot which got a lot of blisters, then the rash increased to my legs, arms, face and so on. My legs were swollen and sore. My husband had to take me to the Hospital because of the pain. I was under one Doctor who was no use so again my Husband looked for a second opinion. This time a Doctor who understood what I have. I had been on the Prednisone and other high doses of Medication and have very bad side effects, blue hands, fingers mouth. This is not good. This condition has affected my kidneys, and I get bad headaches. At this point now my doctor does not know when or if this will ever go away. She thinks I could have this forever, as normally it is only a short term condition. Even now I still get outbreaks on my legs, arms, and my legs itch so bad. The Doctors think that my Vasculitis was caused by a virus not the bite.

Comment from: stevs, 45-54 Male (Patient) Published: March 23

My problem started as a tingling of the toes. As six months went by, the pain increased monthly until it felt like someone had poured gasoline on my feet. My doctor had no idea what the problem was. I went to a neuroscience institute where they gave me a biopsy of the calf muscle and foot nerve. It came back as positive for vasculitis. I took 12 months of cytoxin and prednisone. These lessened the pain, but the pain never went away totally in my feet. A second biopsy determined the vasculitis was in remission. I was finally weaned off the prednisone after two years, but I’m still taking oxycontin and gabapentin, which only take the edge off the pain. They now continue to look for ways to stop the pain, but I'm so tired of the constant pain in my feet.

Comment from: akaylee, 55-64 Female (Patient) Published: March 12

My symptoms came on rather suddenly with cramping in my legs on a Wednesday evening. The pain increased to the point that I could not sleep well that night. It improved some on Thursday with some relief with aspirin treatment. Then it continued through the week and on Sunday I developed a red lacy rash that covered my legs to my hips and by Monday I had some on my arms. Severe pain continued in my lower legs. Tuesday I went to the doctor and he did blood work to check white cell count and electrolytes with that all coming back perfect. He decided to call it Vasculitis and is treating me with 60 mg of Prednisone one time a day for 5 days. The pain improved very quickly and the rash changed to a red prickly rash just on my calves. I'm waiting to see what happens at the end of the Prednisone treatment.

Comment from: alice55, 0-2 Male Published: February 19

A two year old boy developed a severe rash to his lower legs and feet, although he was hospitalized no diagnosis or treatment was provided to his mother. During the next 2 weeks he became lethargic and constantly ran a fever with occasional vomiting and had a brown foul smelling discharge from his right ear. He fell against an open oven door and burnt his right hand. He had no response to this injury and was again hospitalized for a lumbar puncture and a ct scan, both showed normal results. At this time he also had severe conjunctivitis in both eyes and did receive cortisone eye drops with a marked improvement. Sadly 2 weeks later he was found unresponsive and was successfully resuscitated and transferred to hospital. CT scan showed a brain hemorrhage with no trauma. The hospital then made a decision to accuse his mother of child abuse and held him in the ER for 3 HRS while CPS and police photographed and altered a small abrasion on his abdomen to resemble a burn to support their allegation.

Comment from: sandi, 45-54 Female (Patient) Published: February 19

Several years ago, I was rushed to the hospital with the most intense head pain I had ever experienced (and I had been living with Cl.10 migraines for yrs). After administering all different forms of pain meds., and taking an MRI, they did a spinal and realized I was hemorrhaging. They finally decided to perform and Angiogram. While doing the procedure, the neuro-radiologist severed the artery in my neck accidentally and from that they discovered that all of the vessels in my head had "shut down," causing the blood to only "bead" rather than flow. They started me on a regimen of high doses of prednisone, etc. and, after several more angiograms and many months, all of the vessels had opened except one or two. At one point, my doctor told me that my chances of living beyond a year were between 2% and 5%. This was many years ago (about 15, I think). They never came up with a name for my particular form of vasculitis but it was studied. I still worry that it will happen again as suddenly and severe as it did then. My ANA count remains off the charts. Lately I have experienced multiple UTI’s and painful swelling of the ankles, with bruising. Although I'm very grateful to have lived through this and come out as active and healthy as I am today, I never want to go through it again.

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.

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.

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.

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

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.

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.

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.

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.

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!

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.

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.

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.

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!

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.

Comment from: Peter, 55-64 Male (Patient) Published: April 27

I get confusion; feeling like my head is in a vice, mild pressure in the head. I went to the emergency room not long ago; they put me on an IV and almost instantly everything cleared up. I could once again think clearly. I left and then found myself back in the emergency room all over again. Same results.

Comment from: 45-54 Female (Patient) Published: April 23

My first time of experiencing vasculitis was when the tips of my fingers were swollen, blood red, extremely hot and painful. At first the doctor didn’t quite know what to make of it, after tests came back it was diagnosed as vasculitis. I was treated with steroids and all went back to normal. The second time it occurred was in the front of my lower leg. The pain was so bad I felt like someone had hit me with a baseball bat and I couldn’t walk. Again steroids were administered and all went back to normal. During these times, I had un unusual blood test on my liver. My leg is always tender and sometimes I find little sore like blisters on it. I also have SLE and a hypoactive thyroid.

Comment from: cassiesmum, 35-44 Female (Patient) Published: February 19

I have vasculitis, its horrible illness; I cannot wear skirts, or shorts during the warm weather. The backs of my thighs, buttocks and face have sores/spots over them and they’re really painful. At times my whole body is wrecked with pain and fever. My GP is not very helpful, I have begged for stronger pain medication, but I’m told no, because I’m still young? I would love to meet a more sympathetic Gp, any advice on how to find one, would be greatly appreciated. I also have Rheumatoid Arthritis.

Comment from: Sailor, 19-24 Male (Patient) Published: February 19

I'm currently in the Navy and in November, I had this outbreak of red sores all over my face. I felt like a monster. The Navy doctors either didn't know and/or didn't care what it was. They sent me home with some anti-histamines and told me to drink plenty of water. It went away after about a week. It has come back about every two months or so since then. I was home for Christmas last week and I had another outbreak, so I decided to see a civilian doctor. He took one look at me and told me he was almost positive it was vasculitis. I am now awaiting the results from the biopsy.

Comment from: Regsezheyo, 45-54 Male (Caregiver) Published: October 13

My husband was diagnosed with a brain infection, then stroke, then tumor. He is 47 years old and has had a major brain injury. There are now saying the MRI suggests vasculitis. He is at home and doing well after a coma, and Rehab hospital and the doctors still don't know what it was or is. Can vasculitis affect the brain?

Comment from: Malcolm, 45-54 Male (Patient) Published: October 13

During a recent holiday abroad my toes on both feet seem badly bruised without being injured. The rest of my feet were mottled and then the skin began to crack open. The same has happened to my hands without the bruising. I am awaiting tests with a specialist. My doctor thinks it is urgent, but the first available appointment is 5th November. I also suffer a chronic disease called Hydradenitis Suppurative.