blueskies Posted March 23, 2014 Report Share Posted March 23, 2014 Hi, POTS and Mast Cell Activation Disorders are becoming frequently more linked, I've read. I was wondering what those people with Mast Cell problems do/take medication/avoid to help with their symptoms and what works best for them? And any side effects mast cell medications might cause? Any imput would be appreciated. Many thanks, blue Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted March 23, 2014 Report Share Posted March 23, 2014 I'm no help, but I am following this thread because I'm wondering the same things! I'd love to hear what anyone else has to say on this topic... Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 23, 2014 Report Share Posted March 23, 2014 My POTS specialist has a cocktail he uses for Mast Cell issues that includes an H1 blocker (like Allegra, Zyrtec or Claritin), and H2 blocker (like Pepcid), Gastrocrom and Aspirin. My allergist has added in Singulair in my case as well. Sometimes I have to use a couple different H1 blockers in a day or add in some Benadryl. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 23, 2014 Report Share Posted March 23, 2014 My son takes Zyrtec (10 mg 2x day), and Zantac (150mg 2x day). He tried Quercetin, Gastrocrom, Singulair, and aspirin but got no relief. The final medication that really helped him was clonezapam(5 mg 2x day). He is also taking Doxepin(75 mg) that we have tried to eliminate twice, but found he spiraled down further without it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 24, 2014 Report Share Posted March 24, 2014 I am on an H1 and an H2 blocker. I also have to supplement with benedryl. Plus I have to take Tylenol for chronic systemic inflammation which as far as we can tell is probably from my mcas. I also was receiving Xolair shots from my immunologist. I had to switch insurance and they are no longer covered. The longer I have been off of the shots, the more symptoms seem to be returning to an uncontrolled state.Also, I kept a journal for a while of what I was doing and what I was eating so I could try to find patterns. It did help me figure out some foods that causes me to have mast cell degranulations so I now know to avoid those foods. I also figured out certain household cleaners were causing problems for me and found alternatives. Quote Link to comment Share on other sites More sharing options...
blueskies Posted March 26, 2014 Author Report Share Posted March 26, 2014 Hi people,Thanks for sharing your medication treatment for mast cell problems, with me. Meds for H1 and H2 seem to be used by all. Interesting to note that larger doses of H1 and H2 are needed than is recommended on the box. I read somewhere else, I think it may have been another forum, that one person was taking 4 times the manufacturer's recommendation of zyrtec. I intend to speak to my doc about this -- possible safety issues vs possible health benefits. I'm already taking double manufacturer's recommendation for zyrtec. I stopped taking the zyrtec and zantac for quite some time as the zantac really made my very slow bowel motility/constipation problem much worse, but am getting sicker (pots, mast cell problems, -- the migraines that come with both) so am reintroducing these meds and once I feel good to go I'm going to give sodium cromoglycate another try.I seem to have all the symptoms of mast cell degranulation except for diarrhea. I also seem to have all the symptoms of carcinoid syndrome including a growth in the submucosal layers of my stomach lining except for the diarrhea. (as I mentioned, I have very slow motility). But in regards to carcinoid my gi is of the opinion, after ultrasound endoscopies and biopsy last time, that it's just a fatty lesion -- although it does have some similarities to a carcinoid growth so it's not quite as straight forward as he or I would like. I'm overdue for another ultrasound endoscopy -- supposed to have them every two years to check for growth and they want to do a biopsy each time now, but have put this one off because the medications for the procedure causes me to have really bad histamine release and all that comes with it, about 12 hours after the procedure. No fun, in other words and I grow more cowardly every day. plus, as I vented in another post, financially all this stuff is starting to hurt.thanks for your imput.blue Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted March 26, 2014 Report Share Posted March 26, 2014 For those taking the H1 and H2 meds, how long do they take to leave the system?I am just wondering about giving myself a 'trial run' on either of those, but in case I can get an appointment with my allergist sooner than I think, I don't want to bugger up the test by having those in my system. How long before an appointment would I need to stop them if I start them? Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 26, 2014 Report Share Posted March 26, 2014 I was told to stop any antihistamines I was on 3 days prior to my allergy testing if that helps. Quote Link to comment Share on other sites More sharing options...
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