nantynannie Posted March 30, 2009 Report Share Posted March 30, 2009 Hi All,Does anyone know whether a person with MCAD will always have a high serum tryptase level, or does it have to be tested after a flushing episode or some other tigger event? Thank you!Ann Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 30, 2009 Report Share Posted March 30, 2009 My understanding is that with MCAD your serum tryptase will be normal, but with Mastocytosis it is elevated, not just after an episode. Urine methylhistamines will be elevated after an "event" with either. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 30, 2009 Report Share Posted March 30, 2009 Right On, Firewatcher. I am Dxed with MCAD and have never had an elevated serum tryptase caught. The DX of MCAD is complex and a specialist needs to sort it out. They rely not only on lab testing, but symptoms, history, response to medications, etc. I went from being quite disabled to functioning normally with my daily meds, and my trusty epi-pen near by.Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted March 30, 2009 Report Share Posted March 30, 2009 Hi, would someone please clarify for me does serum tryptase have anything to do with the Prostaglandin D2, or F2? ThanksSuzy Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 30, 2009 Report Share Posted March 30, 2009 Patients with mast cell diseases can have elevated urinary methylhistamine (sometimes simplified to urinary HISTAMINE) and urinary prostagandin D-2 (don't know about F-2) following an episode of anaphylaxis (what many here call a POTS episode.) In mastocytosis, the blood serum tryptase is always elevated. In MCAD, it can be elevated following anaphylaxis. Quote Link to comment Share on other sites More sharing options...
all4family Posted March 30, 2009 Report Share Posted March 30, 2009 Thank you Julie.Suzy Quote Link to comment Share on other sites More sharing options...
nantynannie Posted March 30, 2009 Author Report Share Posted March 30, 2009 Thank you all for your replies. I think I understand now. I have other questions for those of you with knowledge in this area:Which medications work best for H-POTS symptoms (with MCAD) H1, H2 or both?Are these meds taken daily as a preventative?Is the POTS actually a mast cell reaction or are mast cells reacting to POTS? (I get flushing and intense inside heat after standing too long, and during temp changes and ramdom other times) For those of us with flushing, do you also get the extreme heat coming from inside the body?Has anyone treating with antihistamine actually improved POTS symptoms on standing or are the antihistamines only controlling the flushing?Thank you for any responses!Ann Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 30, 2009 Report Share Posted March 30, 2009 Thank you all for your replies. I think I understand now. I have other questions for those of you with knowledge in this area:Which medications work best for H-POTS symptoms (with MCAD) H1, H2 or both?Definately both and sometimes an antileuketreine (like singulair.) Some patients also have to take mast cell stabilizers like ketofin and gastrocrom. And, those with high prostaglandin D 2 need to take aspirin as therapy. The aspirin therapy is tricky and needs to be done under a knowledgable doc's supervision as many with mast cell diseases react to aspirin. There is a regimin to acclimate your body to it.I take 10mg zyrtec (H-1), 300mg of ranitidine (H-2), and 10mg sigulair (antileuketreine) every AM. At night, I take 25mg atarax (more H-1) and 81mg aspirin (for prostaglandin D2.) When my chest is tight, I use atrovent via nebulizer and an epi-pen as a last resort.Are these meds taken daily as a preventative?YES![/b]Is the POTS actually a mast cell reaction or are mast cells reacting to POTS? (I get flushing and intense inside heat after standing too long, and during temp changes and ramdom other times) It's a chicken or the egg question, with a connective tissue disorder thrown in there for me too. I suspect that my extreme POTS (as opposed to my everyday POTS) results from the mast cell activation. My blood vessels leak out, causing me to lose body fluid volume, which in turn causes a very low BP, and a fast HR. For those of us with flushing, do you also get the extreme heat coming from inside the body?Yes, at times.Has anyone treating with antihistamine actually improved POTS symptoms on standing or are the antihistamines only controlling the flushing?I have an improvement in my autonomic symptoms (NMH and POTS) and my allergy symptoms (flushing, hives, anaphylaxis, etc.)[/b] Quote Link to comment Share on other sites More sharing options...
ana_22 Posted March 30, 2009 Report Share Posted March 30, 2009 How long did it take for you to see improvement after taking the meds (macksmoms)?im asking my dr about mcad today. i was wondering if i should try taking the antihistamines, can they do any harm if you dont have masto or mcad? Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 31, 2009 Report Share Posted March 31, 2009 How long did it take for you to see improvement after taking the meds (macksmoms)?im asking my dr about mcad today. i was wondering if i should try taking the antihistamines, can they do any harm if you dont have masto or mcad?I can't remember exactly how long it took before I saw improvement. I think it was a gradual process. I added each med as I needed it- rantidine as my GERD was out of control. H-1's as my hives were crazy. Singulair as I was having chest tightness, etc. Before I knew it, I was on a whole bunch of meds and I couldn't stop taking them or I'd get really sick. But, if I took them all daily, I was starting to feel really well- much healthier overall.There is very little danger in trying the OTC MCAD protocol. Of course, it's a good idea to do it with a doctor's supervision. Masto specialists use your reaction to various meds (even OTC ones) as part of the DXing process.All the best-Julie Quote Link to comment Share on other sites More sharing options...
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