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?