A Day In The Life: Ten Days Of Ketotifen & So Far I Feel…

The Lifestyle / Friday, December 22nd, 2017 / 14 comments

I’ve been on Ketotifen for ten full days now. I was so happy to finally get a chance to try it after waiting weeks and weeks (and weeks grrr) for my local compound pharmacy to finally (!) make it for me into a “safe” formula that wouldn’t trigger me.

Being triggered by corn, soy and dairy (plus a million other things) makes it really, really difficult to find anything that doesn’t make me sick(er). It makes managing this disease so much harder than it should be, and limits my diet on a ridiculous level, but it is what it is.

The pharmacist, bless him, did his part and put it in plain ole distilled water for me (yay!). So I’ve done my part and have taken it dutifully for the last ten days (almost) as directed. I admit it wasn’t easy! At first it completely wiped me out. I was a zombie, barely able to stay awake. So I had to adjust the dosing in order to help with the drowsiness which meant splitting one dose up during the day and taking a double one at night. It seems to have helped, without compromising the effectiveness of the medicine.

Within a few days though, I started getting a lot of symptoms I haven’t had in a long time. Stabbing from the “invisible icepick man” attacking me everywhere. Tinnitus. Tingling on my scalp and electrical shocks running along my spine. Pins and needles in my hands and feet. Joint, muscle and bone pain. Headaches. Twitches. Hiccups. Acid reflux. It all came and went and came back and went again and then came back some more.

Even waking me up at night from my Ketotifen-induced coma! Ugh.

I almost quit more than once but then I noticed at the same time that the itching, red skin and inflammation and swelling weren’t plaguing me anymore. The Gastrocrom triggered me to flare up in a similar way at first but then became a miracle drug for me. I remembered I almost quit taking it, too, because of that.

I also remembered the sage advice from Dr. Afrin’s principals:

Identification of the optimal regimen for the individual MCAS patient requires patience and persistence (on the part of the patient, the patient’s support system, and the patient’s health care providers, most especially the one who is primarily coordinating the treatment trials) and a methodical approach.

Based on what I’ve seen these last seven years in more than 1,000 MCAS patients, the odds of getting better are good, by which I mean most patients are eventually able to identify some regimen that helps them feel significantly better than their pre-treatment baseline the majority of the time.

I’m sooo glad I didn’t give up!!

I woke up this morning completely symptom free. ZERO symptoms. I feel amazing. Of course I can’t say 100% it is the Ketotifen because there have been days when I woke up feeling this way before, but it didn’t last. I am hoping this feeling lasts. It feels sooo good, it just has to last.

Maybe Ketotifen will be my own personal Christmas miracle?

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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14 Replies to “A Day In The Life: Ten Days Of Ketotifen & So Far I Feel…”

  1. A few years ago I had good luck with Ketotifen, too, but after a few months it just seemed to quit working. I never could get the same benefit from it again even after upping my dose to 8mgs a day! I was a walking zombie at that point with no real benefit. I also had it compounded and it was expensive so I just gave up. Hope you have a different experience, more prayers and good wishes coming your way.

    1. I’ve read about that happening to people with this and many of the MCAS drugs. It’s frustrating to think about. I wonder what causes the meds to just quit working on us? I still think our mast cells must have little brains and are trying to outsmart us… :/

      1. Actually my specialist said basically just that. Our mast cells want to stay activated because they think they are helping us. It takes a long time for our new cells to be less activate and over time they can reactivate with new triggers or something like that.

        I know this probably didn’t help, just trying to remember how he explained it lol. That’s why this disease is so hard to get a handle on and when you do it’s hard to keep it up. I still wish you the best of luck, you’re doing so well I don’t want to sound like a downer here.

        Merry Christmas, enjoy your symptom free days to come Michelle Dellene. Oh, and thanks for sharing. Your website is terrific. I just found mastcelldisease.org too. Very good job there as well.

      1. Well I’ll be darned. My doctor was sending a script up to Canada for me to try it, I’ll have to call and let them know. Do I need to use a special pharmacy or can they get it at Walgreens for me?

        1. I don’t think Walgreens can get it. I do know that Clark’s pharmacy in Bellevue WA can ship it out, lots of MCAS and mastocytosis patients use them. I emailed them yesterday to double check if they can send it to me and they said yes. Of course mine has to be in distilled water and refrigerated so they probably can’t ship that. But if you can take a pill form I’d check them out if you don’t have a local compound pharmacy. 🙂

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