I tell you it’s so good to here from you any time. You have such a good and positive attitude and I admire your strength. I’m also surprised at how quick your catching on to this in such a short time.
Yes they probably are checking liver and white blood counts for a wile like me on interferon. Soon as they see if you’re tolerating it they will go to once a month. O.K. I will tell you the anti histamines I am on right now and why. Allegra 180mg once a day, normally in the morning. Famotidine or Pepcid 20mg twice a day. This is to prevent mast cell damage to stomach or intestines, which is most typical with this disease. Singulair 10mg once a day for the breathing. Those have opened my lungs up big time. I have started taking those later in the day and am ignoring the zyrtec or I am nothing but lying around falling asleep all day. I never realized how seriously strong and damaging histamines were! I was only allergic to two things in my life that I avoided and they never showed on tests either. I though histamines had to do with those people who get stuffy noses and scratchy throats. I had no idea they could eat something as hard as bone like crazy. If you read anything good about this it is kind of like an allergy, yet kind of like an auto immunes disease because they trigger immunes system too. And they even call it kind of like cancer. Cells are multiplying too many that are not supposed too. That’s why some departments like Chris and the V.A. are having trouble. Which category is it already? It isn’t the mast cells themselves that are damaging but the overabundance of histamine released when they are triggered. Antihistamines for us are important to keep the damage down when they do release.
Yes I get the dry eyes thing too. I do know what sjogrens is and suspected I had that long before this diagnoses. Funny thing is that sjogrens is never found in a person by itself. It normally accompanies another auto immune’s disease like Lupus or Rheumatoid Arthritis or something like that. I swear if they would do some study into this they would find some better treatments and cures for auto immunes diseases and allergies too. Hmmm.
Heat and breathing difficulty!!! That’s me for sure. I have been in denial for years about asthma until I went to my researcher and was properly diagnosed with mild grade. Some doctors say they don’t have anything to do with each other. I SAY THEY ARE WRONG!!! NOBODY can tell us anything about this that we don’t know better because we live it. You will find as I do that winter months are much easier on us. Heat is bad for us we know but so is the bacteria and mold that may be forming in our A/C systems. Also search engine mastocytosis asthma or something. One of those national asthma societies is saying they now believe that mast cells may be playing a role in the cause of asthma in normal patients. That is with people with normal amounts of mast cells. Why don’t they study this thing to help other things too? No money interest???!!!
As far as headaches in my upper spine. Funny you should mention that. This has been my worst summer heat trigger episode ever. Pain behind the eyes face jaw ringing in my right ear. My head sometimes feels swollen and dizzy. You know the feeling you have when you drink too much? Your head hurts and you feel dizzy like the spins? The face and heat sweat machine comes on and you have difficulty breathing. You get sick to your stomach? I get to that point where most would just before they throw up including the neck pain but that’s as far as it goes. I mean if I was truly drunk I could throw up pass out and be over with it. Instead this goes on for hours and has become frequent if I don’t stay out of the heat. This has gotten more frequent every year. As far as possible other spine pains. I am on a cycle. No one believes me on this either. With the exception of 10 broken vertebrae and multiple pinched nerves my back, pain still starts to get more tolerable in about a three-week cycle. It finally starts feeling somewhat better than it starts to itch again. No cutanious or skin masto but internal. I start backing up to doorways to itch up and down my spine center. A day or two later I am in pain walking around stiff again and hear and feel little cracking noises. This cycle is becoming routine. That itching is from the histamine release like someone with hay fever except mine is in my spine or bones not my nose. You see what I mean? I think I will be fine if I just move to Alaska and build an igloo HA HA!!! I see you live in California. I live near Chicago. I used to look forward to the summer. Still do. I just dread feeling this way any more. I have it so much better here in the winter including the breathing. This year we have a drought here. I can count the times we had rain since March on one hand so that I’m sure has something to do with it.
Thanks for your response
Your Masto Buddy :D