@junkcrap50 you have MCAS as well right? I just read about yout Kitotifen post.
Yes. I do. I have just a couple symptoms and tested high in histamine. My MCAS is not adequately treated at the moment. I've been busy and never thought it was a big issue for me (until my high histamin level). I only take Ketotifen 1mg bid right now for my MCAS treatment. I've been holding off tackling my MCAS hard while I get MCAS testing arrange, but I've been procrastinating on it.
There is a lot of good literature out there by Dr Afrin on MCAS. He has a paper that is a therapeutic guide and a summary of his book on MCAS. He also wrote a 90 page chapter on MCAS in a text book called "Mast Cells." He is also quoted and written about on a lot of MCAS and histamine blogs. So you can likely find the info you need without digging into the literature.
That looks like a pretty good treatment protocol to start with. The usual treatment progression begins with H1 and H2 antihistamines. However, two different drugs of the same type can effect patients very differently. Zero effect from one H2 blocker, but try a different H2 blocker and you get miraculous results / cured. So just because you tried one H2 antihistamine, doesn't mean you can eliminate all other H2 blockers or stay on the first H2 blocker you selected. You have to try every single H1 and H2 blocker until you see good results.
There is also intranasal and eye drops of cromolyn, if you have symptoms in those places.
Ketotefin dosages can go up to 8mg/day. That's the highest I've seen it recommended, but may be able to go higher with supervision.
Other supplements include Quercetin, Luteolin, Palmitoylethanolamide (PEA), and Diamine oxidase (DAO). Plus various flavanoids. The prescribed Vitamin C doses seem a little low. That can be taken in much higher doses.
Don't forget to eat a Low Histamine Diet. I've not tried it yet, but a lot of people benefit from it. It does work for many. However, I feel like it would only be noticeable and worth the effort for patients who have MCAS as their
only problem, since it would likely clear up almost all of their symptoms.
LDN I think I have heard has been tried and used. But don't know how effective it is specifically for MCAS.
That's all the info off the top of my head. I'll try to find and post the papers I've mentioned. A Montelukast is sort of the next big step if everything I listed above does not work when taken all together. After Montelukast, there are a several other cancer drugs and powerful drugs that Dr. Afrin uses and writes about. However, I doubt any other doctor would be comfortable prescribing them. They're all powerful drugs and used off label and the only real indication to use them for MCAS is Dr. Afrin's experience. From reading Dr. Afrin's book, MCAS treatment is basically trial and error every single MCAS treatment until you find something that works symptomatically. It takes a while because there are like 3-4 different H1 blockers and 3-4 different H2 blockers. So, X number of months for a trial of a drug * 8 different antihistamines.
