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MCAS approach and questions


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Hey all,

After seeing Dr. Lichtenberger (NC), I probably have mast cell activation. He says this is secondary to my POTS which is in turn caused by my autoimmune disorder. While I'm not entirely sure about the causal chain he proposes (I think I had mast cell issues before my Sjogren's started, but who's to say when autoimmunity actually "starts"?) - I find his treatment recommendations intriguing.

First, he recommended Sentra PM for sleep issues. It's similar to the Neurolink I already take but has choline which counteracts histamine. He gave me a sample and I've taken it two nights in a row now. I did not fall asleep fast but I seemed to sleep very soundly once asleep, which was great.

His second suggestion is that I try Mestinon. I find that interesting because it's essentially a bid to reduce the inflammation cycle through the autonomic system. If anyone has had success with this I would love to hear about it. I am thinking seriously about trying this because it would also probably help my dryness from Sjogren's. A couple of people on my Sjogren's forum take it with success.

Not on my doctor's suggestion, but on my own I thought about trying daily ranitidine. I know that this is a common approach and it makes sense, even though I don't have regular gastric upset as long as I don't eat gluten. But H2 receptors are also present in the vasculature I find that an encouraging approach. I am concerned about taking it daily long-term, however, as I am at risk for osteoporosis. Does anyone take an H2 blocker just when reacting? For example, my POTS is worse during high pollen. What if I just took ranitidine during that time? 

I already take fexofendine daily, as well as flonase for a few weeks at a time during the worst weeks. I also take quercetin daily.

Please share what has helped you. 

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