DEAR DR. GOTT: I was recently diagnosed (in April) with leukocytoclastic vasculitis. Lab reports indicated it was most likely caused by systemic medication. I have discontinued Aggrenox which I believe caused the condition. Contacting the pharmaceutical company (Boehringer Ingelheim), I learned that other people taking this medication are reporting a vasculitis diagnosis.
As soon as I discontinued the Aggrenox, the blisters on my body started to heal and I didn’t get any new blisters; however, I am still getting periodic outbreaks. These new outbreaks look more like heat rash and don’t develop into blisters. I use Allegra and Zyrtec to control these less serious, periodic outbreaks. I am very concerned but my primary care physician and dermatologist aren’t. I also moved from a large city to a small town and am worried that I am not receiving the care that I need for this condition because of it.
I also have cysts on both kidneys and blood in my urine. The cysts were found during a follow up for the vasculitis. I am afraid that it is permanently damaging my blood vessels. Should I see a hematologist? I don’t believe that my doctor has had experience with this in the past and I am very worried.
DEAR READER: Let me start by saying that if you are as concerned as you seem in your letter and fear you are not getting appropriate care, I recommend you ask for a referral to a specialist. A fresh set of eyes on your situation can either confirm that there is nothing to worry about or can help you get the treatment that your current physician is failing to provide. This should also ease your concerns.
Leukocytoclastic vasculitis (LCV), also known as hypersensitivity or allergic vasculitis, is considered uncommon in the United States. Internationally it is thought to affect between 10 and 30 people out of every one million. Vasculitis, in the general sense of the word, is inflammation of blood vessels. Different forms affect different vessels and cause differing symptoms. LCV affects the small vessels and nearly all cases develop a skin rash, typically on the lower extremities. In more severe cases, the kidneys, joints, and gastrointestinal tract and rarely, the lungs, heart, and central nervous system, may be affected.
There are many causes but in up to half of all cases, the cause cannot be found. The use of certain medications such as non-steroidal anti-inflammatory drugs (NSAIDs), thiazide diuretics and antibiotics are some of the most common culprits. Symptoms of skin manifestations can include itching, burning and pain but some may only have an otherwise asymptomatic rash. Petechiae (pin-point bleeding under the skin) and bruising may present. The condition typically clears up in two to three weeks but may recur. Rarely, the vasculitis can become so severe that blood flow is impaired leading to necrosis (death) of tissue.
I suggest you request a referral to a dermatologist or rheumatologist who has had experience or is familiar with the treatment of vasculitis. Be sure to bring copies of all relevant lab work and testing to share. You may even want to write down your own account of when symptoms started, what you experienced, what therapies you have tried, etc., to give the specialist a better insight into your situation.
When it comes to the hematuria (blood in your urine), I recommend you contact a urologist promptly and fill him or her in on the details. You need to be followed by a specialist.
Readers who would like related information can order my Health Report “Medical Specialists” by sending a self-addressed, stamped number 10 envelope and a $2 US check or money order payable to Dr. Peter Gott, PO Box 433, Lakeville, CT 06039-0433. Be sure to mention the title when writing or print out an order form from my website www.AskDrGottMD.com.
