To those of you who are casual visitors to my blog, you might want to skip this post. This is for family and friends interested in my "hive" situation.
Many of you have been thinking I need to get a second opinion. Well, I talked to my doctor about that AGAIN last week. He has told me many times that he would send me anywhere I want to go. In the past, he has sent me to an immunologist, allergist and endocrinologist. It has been many years since I saw them, but there was nothing new for my situation at the time. I have been reluctant to do it all again because I doubt my insurance would pay for more tests that I already have run periodically.
I mentioned the Mayo Clinic which I really don't want to go to for the same reasons---doubt the insurance will pay for the battery of tests they would want to run. My doctor said he'd refer me without hesitation, but that he personally was batting 0 with Mayo. He has sent 8 patients there and even had one misdiagnosed. He just hasn't found Mayo very useful when it comes to skin diseases. Still, he would write the referral. Basically, he'll do anything I ask.
I love my doctor. Skin problems are his business. He has consulted with 6 of his colleagues on my behalf. He has tried many different drugs as he's studied my situation. He says the best studies he's found have been coming out of New Zealand and Australia. In fact we're trying a new drug right now. He says that solving my "case" will be the highlight of his career. I told him that I wanted him to dedicate his book to me and devote a whole chapter to my case!
My doctor told me about an immunologist here in town that he knows---not "knows knows---as in personally---but highly regarded. He only takes unusual cases. He told me that he was going to take 2 or 3 hours this weekend to go through my 3 inch thick file to recap EVERYTHING he's done/tried over the years and email this doctor to ask him if he'll see me. He feels pretty confident that due to the length of time I've had my hives that it shouldn't be a problem.
In the meantime, he gave me this article to share with all concerned parties. This explains my situation the best I've every seen/read!
Here are the highlights---there was a whole lot of medical terminology that I didn't understand. I don't fit all of the demographics, but they symptoms are exactly the same. My personal comments are in red.
What I have is referred to as Pressure Urticaria.
Pressure urticaria is characterized by the appearance of weals after pressure to the skin. Lesions can be induced by a variety of stimuli including standing, walking, wearing tight clothes or sitting on hard surfaces. The condition can be aggravated by heat, aspirin or menstruation. I usually have problem after a long plane flight--so maybe it's the sitting. I've always said that it's like I have "hive" socks on within a few hours after a long flight. When I got to St. Louis this summer, I had been off the prednisone for 7 weeks. As soon as my plane landed, Chrissy picked me up and we went straight to a museum where I did a lot of walking, then shopping--so a lot of walking and on my feet for the day. By the evening, my hives were starting up. I have had a giant hive that covered my entire back one time because I used the heat seat in my car. I use my heat seat all the time, but that never happened again.
Pressure urticaria is uncommon, but not rare. It is a chronic disease with a mean duration of 9 years. The peak age of onset is in the 20’s and 30’s. The hands, feet, trunk, buttocks, legs and face are most commonly affected. I was told this might last 7 years at the beginning and was in my mid 40's when it started. What body parts are left besides those listed? I've had hives all over, just not at the same time. Mostly my feet and hands make me the most miserable. If I have them on my buttocks or thighs, they are HUGE! My hives are raised--1/4" with a red ring around them.
Weals may be accompanied by fever, fatigue, chills, headache and joint pain. This is spot on. I've always said it's like having the flu. I can barely crawl to the bathroom. I have not ever had joint pain. But, after 4 hours of taking the prednisone, ALL of these symptoms subside. Then I just want to sleep for hours. You can almost set your watch by it!
The cause of pressure urticaria is unclear but it is likely to be an autoimmune disease. A blood count many show an increased white cell count and ESR, but it is often normal. No vasculitis is found. This is why I've referred to my hives as autoimmune hives. I have had those blood tests in the midst of an "episode" but don't really understand what all that means. I don't know what vasculitis is.
The results of treatment of pressure urticaria are relatively disappointing. Antihistamines rarely reduce pressure urticaria. Topical steroids are not of benefit and can result in skin thinning. Systemic corticosteroids produce variable responses and long term use is associated with many potential adverse side effects. This is why I've always said it's an internal sort of thing---external creams do not work. Yes, the prednisone is bad long term, but it's my only relief. Due to my doctor's diligence with the blood tests, I have had no long term problems with my organs. And now we know that my bones have not been affected either. I am still getting a bone density test asap--if I can ever get THAT doctor's office call me back. I've called 3 weeks in a row and still have not heard back. I'm going to walk in the office this week. And I'll be complaining when I see my doctor in November for my annual check up.
After reading this, I feel very fortunate that the prednisone works for me. The article went of to tell about people out there where nothing helps---they literally cannot get out of bed or work. Of course, like always, I'm certain this new drug is going to work. I'll let you know. And I'll let you know when I see the immunologist. Fingers crossed!