Well;
By now most of us are familiar with the Brain Fog symptom that comes with this disease. I have this friend... That forgot to refill her Ketotifen til she had 1 pill left !!! Guess I- I mean my friend- was too focused on the other 9+ OTC and prescribed meds...?
ANYWAY:Do yourselves a favor if you're like "my friend" & not the most organized person.
Get a calendar specifically for your meds.
Write down when your meds (OTC & Scripts) are due to run out,and renew/replace them ahead of time !
Keep the calendar in a prominent place where you'll be SURE to see it !
Yup, still learnin

If I wrote it down, I'd lose the note!  So, what I do is to keep two weekly pill boxes filled.  If I see that I'm running out of something when I fill them, I'll order that medicine right away.  Luckily, most of my meds are over the counter.  If I need to have something asap, the 24 hour Walgreens isn't too far away.  

Hi Lori,

  Distance is a big obstacle!  How long does it take after you order it for you to receive your meds?  From what pharmacy do you get Ketotifen?  I'm thinking of giving it a trial.  What doses do people typically begin taking?

Thanks!

Joan:
I'm in day 10 of my trial w/ketitofin from Clark's. So far I seem to have no issues like I did with Zaditan. Right now lowering Gastrocrom as I  add it. Will be upping to 2 this weekend. The pharmacist there is
a great guy. His recommendation to me was to get up to 3 per day & off gastrocrom completely as he doesn't think much of it, but would mix it if I wanted it so get away from Azur & it's cost, although I have insurance, seems to me like they are ripping our insurance companies off. It takes time to get setup with them as you have to mail script to them, but refills can be done by email. After they had my script took only 3 days to get to midwest.
Lori, I didn't know it was approved by the FDA. Let me know if you have any luck with insurance.
MikeV

Joan:
My understanding of it is that it is better absorbed by the body than gastrocrom. The down side is that some people experience more
sleepiness with in & more munchies. So far no sleep problem, but
are a little bit more hungry. But as I said I'm early into my experiment. The real test will be this next week when I plan to up to 2 pills a day. In addition haven't changed any of the rest of my meds.
MikeV

Hey Mikev, so glad you are doing well this round with the ketotifen! I was able to ramp up pretty quickly with it, to 6 mg a day (2 mg pills). I take mine all in the evening, just because it is easy, and was told that it builds up, so you don't have to spread it out. I take one at dinner, and the other two at bedtime. Don't know if this is true, but I seem to be doing pretty well on it.

Joan, in addition to helping my GI symptoms, ketotifen has almost eliminated my severe joint pain and swelling. It feels to me as though it hits different histamine receptors that the other meds I am taking. And yes, it is also a mast cell inhibitor.

Yes, I am taking plenty of antihistamines.

I take Zyrtec, Zantac, Ketotifen, and Singular. I don't really find any of them make me sleepy, but that is very individual. One of my symptoms of a reaction is to have periods where I practically pass out, or keep nodding off. That has improved on antihistamines, and I get better sleep, so I am less sleepy.

Mike, the joint pain improved slowly, but all of the sudden I realized, no more swelling or pain! So let's hope it works out for you.