"I'm itchy!" and other fun stories...
I'm writing this out as a bulletin so I don't have to tell everyone the same story. Over and over again....
So, most of you know I went to Northwestern University Allergy and Immunology Center yesterday to meet with doctors about my skin "fun."
I met with the resident/fellow/intern and the doctor. After giving them the HUGE rundown of all my medical ailments, surgeries, episodes of hives (since birth), they determined none of that had an effect on my current skin disease. The technical term for what I have are idiopathic urticaria (hives from scratching) and dermatographism (the ability to write on the skin--in my case, with resulting red, heated, inflammatory skin patches). Like I have been told before, there is no cure, and only antihistamine treatments are available to restrict the reactions. The doctors determined that newer histamines aren't controlling the reactions enough on their own (Zyrtec/Claritin), so he prescribed me to take Tavist 1.34 mg daily (1-2 times/day) and Claritin 10 mg or Zyrtec 10 mg daily. This way, I'll take one for the day and one for the night. If this doesn't work, I'm to return within 2-3 weeks to the site for another prescription/antihistamine cocktail.
What I learned:
1. The doctor said that my case is the worst he's ever seen. So much so that he had all the nurses come in to look at me. Yay. I'm a freak of nature! Awesome... just what I wanted. He was amazed at my skin's reaction. I was not.
2. There is NO SUCH THING as STRESS-INDUCED hives. This has only been discovered in the past 3 years. And telling someone that their "subconscious is stressed" (as has been told in the past) is also incorrect. (See below for actual explanation.)
3. In 50% of people with idiopathic urticaria/dermatographia (very rare though), a common protein in the blood has been discovered. What has also been found is that, if I were to transfuse my blood into a normal, unaffected person, within a few days, the "control" person would have my skin disease. AWESOME!
I don't know if this is genetic or if I can pass it to my children. I'll ask about this on my next visit--particularly so I can tell Brig and Matt to watch for it in their kids if it's found to be genetic.
Not a lot of research has been done to determine the specificity of protein--where it comes from, why it reacts the way it does, etc. In 6 weeks after I have my hives under control, I'm returning to the site to have lab tests and skin tests performed. I don't know if they're going to research for this protein, but we'll see. Right now, if they did allergy testing (just to 100% rule out any compounding problems), all the tests would come back as positive, thus meaning, they are all negative--simply because the pricking of my skin would produce the same results (ie, hives/puffy skin reaction) across the tests.
4. Nothing I do will lessen this reaction. No lack of soap, perfume, food dye, specific food, or any other external influence will lessen my reactions. He repeated to me that this "wasn't my fault" and that "Nothing I do will change this." Which, actually, is slightly comforting so that I can return to my regular medicine, eating, perfume/lotion, and other habits--despite still having anxiety about the hives. Hopefully the new medicine will control the hives so I don't have the extreme anxiety anymore and can stop wearing long pants and long sleeves. If the medicine does not work, I will most likely ask for some sort of anti-anxiety pills to help me. At this point, sleeping, working, and going out in public has become difficult, so I hope the new meds work.
One thing he did recommend (because he HAS to) is that I cut down on drinking. Studies have proven that hives can be exacerbated with alcohol. HOWEVER, I reinforced that I have never seen this and might have actually seen the opposite reaction (lessening of the hives). However, I thought about it, maybe in my drunkenness, I just pay less attention to the hives and can't feel them as much--ie, redirected attention/focus. I've been thinking about cutting back anyway, so whatevs. It'll help me lose those 10 pounds anyway.
5. The hydroxezine (that I thought gave me chest tightness/constriction) hasn't been reported to have that side effect. The doctor suggested it might have been heartburn (yeah right). It still felt like a heart attack to me though.
So, that's my story. Nothing really of note. Same situation--just different meds. Will let you know if I find a magic lamp and "cure" my disease with 1 of those wishes...
Later duders.
Kerry
So, most of you know I went to Northwestern University Allergy and Immunology Center yesterday to meet with doctors about my skin "fun."
I met with the resident/fellow/intern and the doctor. After giving them the HUGE rundown of all my medical ailments, surgeries, episodes of hives (since birth), they determined none of that had an effect on my current skin disease. The technical term for what I have are idiopathic urticaria (hives from scratching) and dermatographism (the ability to write on the skin--in my case, with resulting red, heated, inflammatory skin patches). Like I have been told before, there is no cure, and only antihistamine treatments are available to restrict the reactions. The doctors determined that newer histamines aren't controlling the reactions enough on their own (Zyrtec/Claritin), so he prescribed me to take Tavist 1.34 mg daily (1-2 times/day) and Claritin 10 mg or Zyrtec 10 mg daily. This way, I'll take one for the day and one for the night. If this doesn't work, I'm to return within 2-3 weeks to the site for another prescription/antihistamine cocktail.
What I learned:
1. The doctor said that my case is the worst he's ever seen. So much so that he had all the nurses come in to look at me. Yay. I'm a freak of nature! Awesome... just what I wanted. He was amazed at my skin's reaction. I was not.
2. There is NO SUCH THING as STRESS-INDUCED hives. This has only been discovered in the past 3 years. And telling someone that their "subconscious is stressed" (as has been told in the past) is also incorrect. (See below for actual explanation.)
3. In 50% of people with idiopathic urticaria/dermatographia (very rare though), a common protein in the blood has been discovered. What has also been found is that, if I were to transfuse my blood into a normal, unaffected person, within a few days, the "control" person would have my skin disease. AWESOME!
I don't know if this is genetic or if I can pass it to my children. I'll ask about this on my next visit--particularly so I can tell Brig and Matt to watch for it in their kids if it's found to be genetic.
Not a lot of research has been done to determine the specificity of protein--where it comes from, why it reacts the way it does, etc. In 6 weeks after I have my hives under control, I'm returning to the site to have lab tests and skin tests performed. I don't know if they're going to research for this protein, but we'll see. Right now, if they did allergy testing (just to 100% rule out any compounding problems), all the tests would come back as positive, thus meaning, they are all negative--simply because the pricking of my skin would produce the same results (ie, hives/puffy skin reaction) across the tests.
4. Nothing I do will lessen this reaction. No lack of soap, perfume, food dye, specific food, or any other external influence will lessen my reactions. He repeated to me that this "wasn't my fault" and that "Nothing I do will change this." Which, actually, is slightly comforting so that I can return to my regular medicine, eating, perfume/lotion, and other habits--despite still having anxiety about the hives. Hopefully the new medicine will control the hives so I don't have the extreme anxiety anymore and can stop wearing long pants and long sleeves. If the medicine does not work, I will most likely ask for some sort of anti-anxiety pills to help me. At this point, sleeping, working, and going out in public has become difficult, so I hope the new meds work.
One thing he did recommend (because he HAS to) is that I cut down on drinking. Studies have proven that hives can be exacerbated with alcohol. HOWEVER, I reinforced that I have never seen this and might have actually seen the opposite reaction (lessening of the hives). However, I thought about it, maybe in my drunkenness, I just pay less attention to the hives and can't feel them as much--ie, redirected attention/focus. I've been thinking about cutting back anyway, so whatevs. It'll help me lose those 10 pounds anyway.
5. The hydroxezine (that I thought gave me chest tightness/constriction) hasn't been reported to have that side effect. The doctor suggested it might have been heartburn (yeah right). It still felt like a heart attack to me though.
So, that's my story. Nothing really of note. Same situation--just different meds. Will let you know if I find a magic lamp and "cure" my disease with 1 of those wishes...
Later duders.
Kerry