MCAS & Ketotifen: My Experiences So Far


The Treatments / Sunday, December 31st, 2017 / 4 comments

If you’ve been following this blog long, you’ll know that I stopped taking most of my mast cell medications a few months ago and started over, using the principals Dr. Afrin lays out in his book. Yes it sounds mad, but in my case I had to do it, as scary as it was.

Until three weeks ago, I was down to just using oral cromolyn sodium (generic for Gastrocrom) and Nasalcrom, both of which are mast cell specific drugs, and I am (still) having very good luck with them but I was still having some allergy and inflammation symptoms, because those two drugs are limited to just the mast cells they touch. I knew I needed antihistamines again so my doctor added in Ketotifen as an H1/H2 blocker and anti-inflammatory (yay!) and I had it compounded in distilled water to be safe.

Now if you go looking it up, Ketotifen is typically just listed as an H1 antihistamine and a full body mast cell stabilizer in most places around the web but I did a little digging and found that it does, indeed, work as a dual action H1/H2 blocker and an anti-inflammatory, not to mention as an antidepressant! No wonder I feel so much better already!

Here’s what I found about it in a clinical medical book called Drug Therapy in Dermatology here:

And in another medical text book called, Clinical Ocular Pharmacology, they also list it as a dual and even triple (!) action antihistamine:

Notice it also works on the H3 receptor? There is evidence that we could use some blocking of that receptor, too, as Dr. Afrin points out in his book, but Ketotifen has that covered somewhat, too!

No wonder it works wonders so well for mast cell patients. Well, for some of us, apparently. I have spoken with a few people or read in a few places that it doesn’t help everyone but it sure is helping me.

What exactly is it helping me with?

  • sniffling/sneezing/runny nose (I’m not reaching for the Nasalcrom much anymore!)
  • watery/burning/itchy eyes
  • ears ringing/aching (especially when I go out in the cold!)
  • itching/burning skin
  • brain fog/energy/mood (I feel incredibly happy!)
  • some gastro symptoms that the Gastrocrom wasn’t completely covering (GERD, heartburn)
  • insomnia/sleep issues (I sleep like a baby on it when I’m not triggered)

At first I was getting a flaring of a lot of symptoms as my mast cells fought back, just like with the cromolyn, but that has all died down now. When my period first started I was symptomatic, but I took an extra dose of my Gastrocrom and Ketotifen for those couple of days and everything calmed way down, including the pins and needles in my hands and feet.

Today I am back to feeling ZERO symptoms again, which I have had a few days off and on now since starting it. I’m sure it won’t last because it’s almost guaranteed I’ll be triggered again, probably by some self-sabotaging mean, but it sure is nice to experience it.

A lot of people may wonder, wait now, if the medicines work, why do you still get triggered?? Because our mast cells are hyper-reactive jerks. Remember, I was nearly bedridden just two years ago with 54/58 symptoms of this disease and it won’t correct itself overnight! Trigger avoidance is still imperative but over time, as my immune system becomes less reactive, which it will, I should be less easily triggered by things. I might even be able to drive and have cheesecake again!

Hoorah!!

So I am sticking with the Ketotifen and hoping for the best. And singing its praises. As always, this is not medical advice, just my own experiences with living life in the mast lane.

Good luck and remember, we’re ALL in this mast cell craziness together!!

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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4 Replies to “MCAS & Ketotifen: My Experiences So Far”

  1. I actually found your blog looking for information on tumeric/curcumin effectiveness and mast cell disease. That was in May. I did not see a follow w up post. Has that worked for you?

    So far, Salt is the only spice I can regularly tolerate. I used to enjoy tumeric making yellow rice, but now allergic to so much, have been afraid to try it.

    I am looking to deal with the constant inflammation and belly bloat. Appreciate your thoughts and posts.

    1. Hi Cristine, I haven’t had the courage to try the curcumin because of the potential of it being high in salicylates since I’m sensitive to them apparently! Ketotifen is an anti inflammatory so I’m hoping it’s the answer, after needing one for so long and not being able to find one that doesn’t trigger me. Thanks for reading and good luck!!

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