Hi Futurehope,
I started on the Ketotifen about a month ago. As with most of us, I had trouble with some side effects so I had to back off and start with a really small dose. The recommendation I was given was to take 1 mg/mL daily. I ordered the liquid form of the compounded med and I started with only 2 drops in 16 oz. of water. I have worked up from there to 9 drops twice a day with very few side effects. As with most meds, I tend to get dizzy and have tachy if I take too much at once. I am estimating that 1 mL is about 24 drops.
All in all, I found this med to be much easier to work up to an optimal dose, especially as compared to the cromolyn (which took me several months just to get to half the recommended dose).
For the patients who can tolerate this med, it is a much better stabilizer (according to the mast cell experts) than the cromolyn and the side effects are fewer...not to mention the cost!! My cromolyn is about 1200.00 a month and the Ketotifen is 23.00 a month. NO comparison if you are paying out of pocket or have a large co-pay.
I feel like a new person on this med. I have energy, sleep better and have fewer reactions on a daily basis. I still react, but not nearly as severe as before. It is supposed to make you sleepy so they recommend you take it before bed. I get "wired" when I take it and could clean my whole house at night!
I personally am not comfortable ordering meds from different countries. I am sure others who are more knowledgeable would disagree, but I prefer to order where I can talk directly to the pharmacist and use him/her as a resource when necessary.
Myself and many others use Clark's Pharmacy in Bellevue, WA. The compounding pharmacist is excellent and will give you a half hour or more of his time explaining about this particular medication. It has been used in other countries successfully and with very few side effects for 40-50 years in children with asthma. Because there are not enough people who use the drug, the pharmaceutical companies will not make it in the US because they can't make enough money off of it (this is my understanding anyway).
Call the pharmacy and ask for Mark. He will take all the time you need and answer any questions or concerns you have about this med. He makes it in only the pure form....I have mine compounded in liquid because the raw form of the drug is water soluble and it is JUST mixed with distilled water.
If you have any other questions...please feel free to ask.
Here is the information:
Clark's Pharmacy
15615 Bel Red Road
Bellevue, WA 98008
phone: 425-881-0222
Fax:425-885-1213
For your convenience, they will also send you their email address so you can email your prescription refills in....nice
Hope this helps. Hugs, Lynda