sue1234 Posted April 18, 2014 Report Share Posted April 18, 2014 I was reading this article and thinking this is very similar to what I feel like.http://abcnews.go.com/Health/ohio-soccer-player-dangerously-allergic-sweat/story?id=23367577&singlePage=trueI am wondering if it is really an allergy to sweat? I get this kind of thing, but not to the extent of my throat/tongue swelling, but I don't stay in the heat long enough to see what happens if I continue in the heat. My point is I barely am able to sweat, only a moistness and only in a few areas. I just do this when I hit above my comfort zone, which can be just 80-82F. It is not hot enough for sweating, but I start swelling and itching intensely. I just wrote a post about this a week or more ago. I have seriously wondered if I would go into "shock" if I cannot correct my overheating! I will save this article and possibly bring it to my doctor. I see there is an injection that can counter this reaction, and someone was saying in the comment section that, on occasion, only one injection was needed to put this reaction into remission.However, I feel like I still need to get to the bottom of WHY this is happening! Quote Link to comment Share on other sites More sharing options...
yogini Posted April 19, 2014 Report Share Posted April 19, 2014 Have you been tested for mast cell? Quote Link to comment Share on other sites More sharing options...
blueskies Posted April 19, 2014 Report Share Posted April 19, 2014 Do you see an allergist? Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 19, 2014 Report Share Posted April 19, 2014 Sue,I was on Xolair shots until mid-January and they did help me although it still wasn't perfect. I think the person that commented that one shot can reverse the condition should do some fact checking. Xolair is not a drug meant to be used in the short term. It is a biologic that suppresses IgE. Once you stop the suppression, your body will start having reactions again. I had to stop due to an issue with insurance and after about 2 months I could feel certain symptoms coming back. It was also a gradual decrease in symptoms over the months I was taking it. It is only FDA approved for asthma patients that have failed traditional treatment, so getting approved to receive it for off label use is quite a task. The drug company first reviews the doctor's notes for proof you are a good candidate. If they approve you, then they will work with your insurance to try to get you approved for coverage. Each 150 mg shot is a little over $750 and the least you would receive the shot is once a month. I was twice a month. If you can't afford the drug even after insurance coverage, the drug company may subsidize the extra cost based on your income. If you have any questions about it, I'm happy to try to answer them. And, there are serious black box warnings for this drug, so deciding to take it should be considered seriously. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 19, 2014 Author Report Share Posted April 19, 2014 Yogini and Blue, about 2 years ago I went to an allergist about being tested for MCAS, but she was not familiar with it and didn't want to. I asked if it seemed okay for me to try various meds used for it and she said she couldn't see any reason not to. Then I tried various H1s and H2s on my own, and I have always felt awful on them. Then I decided, in my opinion, that having a diagnosis of MCAS didn't mean that much to me, as it was just another symptom of the whole POTS(another symptom) complex. This really bad susceptibility to heat began last year, and I can see this year it is already going to be worse. The reaction I get to heat is the ONLY symptom with the whole POTS entourage that seems almost "life-threatening" to me. Everything else is just "life-altering".Katybug, that same person that said somewhere it showed that 57% of people do well after one dose also said that it was recently cleared by the FDA for chronic urticaria. I don't know if anything this person says has validity behind it. I was thinking Xolair would be a last resort for me to possibly use in the warmer weather months. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 19, 2014 Report Share Posted April 19, 2014 It wouldn't surprise me if people, especially with asthma, do well after one dose but I just want you to be aware that just like all immuno-suppressive drugs, it does not cure the problem. It only suppresses that part of the immune system that causes allergic reactions, IgE. This helps to reduce mast cell degranulation as IgE reactions are one major cause of mast cell degranulation. Because it isn't a cure, but a treatment, discontinuing the injections will allow the symptoms to come back. I hope they right about it recently being approved for chronic uticaria because that would be great and make it a lot easier to get. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 19, 2014 Report Share Posted April 19, 2014 http://www.medpagetoday.com/Dermatology/Atopy/44880 Quote Link to comment Share on other sites More sharing options...
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