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.
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Rheumatoid arthritis is an autoimmune disease that causes chronic inflammation of the joints, the tissue around the joints, as well as other organs in the body. Because it can affect multiple other organs of the body, rheumatoid arthritis is referred to as a systemic illness and is sometimes called rheumatoid disease.
Sjögren's syndrome is an autoimmune disease involving the abnormal production of extra antibodies that attack the glands and connective tissue. Sjögren's syndrome with gland inflammation (resulting dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjögren's syndrome. Sjögren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjögren's syndrome. Though there is no cure for Sjögren's syndrome, the symptoms may be treated by using lubricating eye ointments, drinking plenty of water, humidifying the air, and using glycerin swabs. Medications are also available to treat dry eye and dry mouth.
Systemic lupus erythematosus is a condition characterized by chronic inflammation of body tissues caused by autoimmune disease. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous
system. When only the skin is involved, the condition is called discoid lupus.
When internal organs are involved, the condition is called systemic lupus
erythematosus (SLE).
Hepatitis C is an inflammation of the liver due to the hepatitis C virus (HCV), which is usually spread by
blood transfusion, hemodialysis, and needle sticks, especially with intravenous
drug abuse. Chronic hepatitis C may be treated with interferon, usually in combination with anti-virals.
Dementia is a significant loss of intellectual abilities such as memory capacity, severe enough to interfere with social or occupational functioning. There are different criteria classification schemes for dementias such as cortical, subcortical, progressive, primary, and secondary dementias. Other conditions and medication reactions can also cause dementia. Dementia is diagnosed based on a certain set of criteria. Treatment for dementia is generally focused on the symptoms of the disease.
The hepatitis B virus is a unique, coated DNA virus belonging to the Hepadnaviridae family of viruses. The course of the virus is determined primarily by the age at which the infection is acquired and the interaction between the virus and the body's immune system. Successful treatment is associated with a reduction in liver injury and fibrosis (scarring), a decreased likelihood of developing cirrhosis and its complications, including liver cancer, and a prolonged survival.
Thrombocytopenia refers to a decreased number of platelets in the blood. There are many causes of thrombocytopenia such as decreased platelet production (viral infections for example rubella, mumps, chickenpox, hepatitis C, and HIV); increased platelet destruction or consumption (for example sulfonamide antibiotics, heparin, blood transfusions, and lupus); or increased splenic sequestration (enlarged spleen due to conditions for example liver disease, blood cancers, and more). Treatment of thrombocytopenia depends on the cause.
Henoch-Schonlein Purpura (HSP or anaphylactoid purpura), a type of blood vessel inflammation, results in rash, arthritis, and occasional abdominal cramping. HSP often resolves on its own. Joint pain may be treated with anti-inflammatory and cortisone medications.
Polymyalgia rheumatica (PMR) is a disorder of the muscles and joints that causes pain and stiffness in the arms, neck, shoulders, and buttocks. Treatment for polymyalgia rheumatica aims to reduce inflammation with aspirin, ibuprofen and low doses of cortisone medications. Giant cell arteritis, inflammation of blood vessel walls, affects 10-15 percent of polymyalgia rheumatica patients. Symptoms of giant cell arteritis include fatigue, weight loss, low-grade fever, jaw pain when chewing, scalp tenderness, and headaches. High doses of cortisone medications are used to treat giant cell arteritis.
Kawasaki disease is a rare children's disease characterized by a fever that lasts more than five days and at least four of the following five symptoms are present: rash, swollen neck lymph gland, red tongue, swelling or redness of the hands or feet, and conjunctivitis. High doses of aspirin are used to treat Kawasaki disease. Cortisone and antiinflammatory drugs may also be used during treatment.
Wegener's granulomatosis, a condition that usually affects young or middle-aged adults, is an inflammation of the arteries supplying blood to the sinuses, lungs, and kidneys. Symptoms of Wegener's granulomatosis include bloody sputum, fatigue, weight loss, joint pain, sinusitis, shortness of breath, and fever. Wegener's granulomatosis may be fatal within months without treatment. Treatment aims to stop inflammation with high doses of prednisone and cyclophosphamide.
Renal artery stenosis is a narrowing of the diameter of the renal arteries. When the renal arteries narrow, the result is restricted blood flow to the kidneys, which may lead to impaired kidney function and high blood pressure (referred to as renovascular hypertension (RVHT). Renal artery stenosis can occur in one or both kidneys. The primary cause of renal artery stenosis is atherosclerosis. Risk factors for renal artery stenosis include high blood pressure, high cholesterol levels, age, cigarette smoking, and diabetes. Symptoms of renal artery stenosis include high blood pressure that does not respond to treatment, severe high blood pressure in individuals younger than 30 or greater than 50 years of age. Renal artery stenosis is diagnosed with imaging and functional tests. Treatment for renal artery stenosis include medication or surgery.
Behcet's syndrome is a disease characterized by three symptoms: genital ulcers, recurring mouth ulcers, and inflammation around the pupil of the eye. Symptoms of Behcet's syndrome may also include inflammation of other areas of the body, such as the brain, joints, skin, retina, and bowels. Oral steroids, antiinflammatory drugs, and steroid gels, pastes, and creams may be used to treat Behcet's syndrome.
Relapsing polychondritis is an uncommon, chronic disorder of the cartilage that is characterized by recurrent episodes of inflammation of the cartilage of various tissues of the body. Tissues containing cartilage that can become inflamed include the ears, nose, joints, spine, and windpipe (trachea). Tissues that have a biochemical makeup similar to that of cartilage such as the eyes, heart, and blood vessels, can also be affected. Nonsteroidal antiinflammatory medications (NSAIDs) is used as treatment for mild cases of the disease. Steroid-related medications also are usually required.
Churg-Strauss Syndrome is a form of vasculitis. Vasculitis is an inflammation of the blood vessels. Symptoms of Churg-Strauss syndrome include fatigue, weight loss, inflammation of the nasal passages, numbness, and weakness. Treatment is directed toward both quieting the vasculitis and suppressing the immune system.
Takayasu disease (also referred to as Takayasu arteritis) is a chronic inflammation of the aorta and it's branch arteries. Takayasu disease is most common of Women of Asian descent and usually begins between 10 and 30 years of age. Symptoms include: painful extremities, dizziness, headaches, chest and abdominal pain, and a low-grade fever. Treatment for Takayasu disease includes cortisone medication to suppress the inflammation.
Polyarteritis nodosa is a rare autoimmune disease characterized by spontaneous inflammation of the arteries of the body. The most common areas of involvement include the muscles, joints, intestines (bowels), nerves, kidneys, and skin. Poor function or pain in any of these organs can be a symptom. Polyarteritis nodosa is most common in middle age persons. Polyarteritis is a serious illness that can be fatal. Treatment is focused on decreasing the inflammation of the arteries by suppressing the immune system.
Severe acute respiratory syndrome (SARS) is a respiratory disease caused by the coronavirus SARS-CoV. Symptoms include fever and shortness of breath. Patients with SARS often require oxygen and severe cases require mechanical ventilation.
Essential mixed cryoglobulinemia is a condition caused by abnormal blood proteins called cryoglobulins. Symptoms include joint pain, swelling, skin vasculitis, enlarged spleen, and nerve and kidney disease. Treatment involves medications that reduce inflammation and suppress the immune system.
If you think you have a medical emergency, call your doctor or 911 immediately.
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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.
Related Reading: Sjogren's syndrome | colchicine