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

Yes, the pharmacy will ship it right to your home.  I have most of my medications compounded and so they are shipped on a regular basis.  I assume if there would be any problem as far as weather conditions, the pharmacist would arrange something different. It would seem the liquid could have more problems (I don't worry about the capsules), but since the Ketotifen is water soluble it would maintain the same chemical "state" only it would be wet. (Some chemist may certainly correct me if I am wrong about this).  

I need to refer back to my tape recorded message to listen to what exactly was said to me concerning the dosage of this medication.  I don't know if I was given "The" so called normal dosage for my weight or if it was what this doctor feels should be "enough" for all mast cell patients. I will check on that soon and PM you, OK?  

Like you, I have been prescribed 1 mg/mL twice a day.  I am now taking 1/2 mL in the morning and 1/2 mL at night.  It has a 12 hour half life so in my opinion I am covered well for 24 hours.  

As far a the measurment, they will send a syringe if you choose to use the liquid form.  I filled the syringe to the 1 mL line and then counted the drops as I put them back into the bottle.  I get between 20-24. I should probably do this several times to get the mean (average) more exact.  So I just put 11 or 12 drops in a bottle of water and drink it.  If you tolerate the med well, then you would just have to measure out the 1 mL.  I hope that makes sense.

I do not take any other H1's because I haven't been able to tolerate any.  I have tried all different ones both compounded and OTC.  I don't tolerate benedryl at all. So I am grateful I can take this because it does have the H1 in it...and possibly that is why my symptoms are so much better now.  I do take Pepcid daily.  I take 80-120 mg a day.  This seems like a lot, but Dr. Afrin said that was ok.  I only take the extra 20-40 mg if I have a lot of stomach pain.  For some reason the cromolyn (I take 6-7 vials a day) does not help the stomach pain and the Ketotifen doesn't either (at least so far).

I hope this helps!!  I wish you the very best in getting this med on board!  It's so tricky for us to sneak these meds in "under the radar" so our mast cells don't catch on!!

Take care....hugs, Lynda

Hey Lynda. This lady in this youtube video and a person in the comments is saying you can get sodium cromonlyn formulated at pharmacys for $50 or even less for a month's supply vs the 20 times higher cost of the name brand.

Ever heard of that?

http://www.youtube.com/watch?feature=player_detailpage&v=7Aog_Mfcoow#t=143s

Hope, did you check with your insurance company to see if they will cover the Ketotifen?  Both of the compounding pharmacies I use also do not submit my compounded meds to my insurance company. I just figured they knew that they wouldn't be covered anyway and that's why they didn't.

Then I called my insurance co. and asked them if they would cover them and they said all I had to do was send in the receipts (and fill out the request). Now they cover most of them. (I haven't sent in the Ketotifen yet however).  

Also, if you need some help getting them covered, I know Dr. Afrin would write a letter for you stating that this is medically necessary.  He has been trying to work with the insurance companies of his patients so they better understand how cost effective this is to do for mast cell patients!!

Hope this helps..... Hugs, Lynda

p,s, I usually order mine 1-2 weeks in advance. I do remember that once it was sent from WA I think it only took a day to get here (i am in WI)

Hi Susan,

It's interesting that it helped stop your itching and overall reactivity.  I would say the exact same thing!  I haven't had any itching for the last two or three weeks or that burning and stinging sensation I sometimes get.

I am only taking 1/2 a mL in the a.m. and p.m.  I find I get really hyper on it so I will probably start taking it just in the morning.  Do you feel it covers you until the next night?  Or do you get some breakthrough symptoms closer to the time you take it?

That's a great idea to get the 3 month supply at a time. Thanks for the info.  Hugs, lynda

Lynda, I am assuming the ketotifen covers me the whole 24 hours. The pharmacist at Clark's told me to take it at night, as most people get sleepy with it. Funny you get wired, but I am the same with other drugs, having the opposite of the expected reaction. Anyway, I think it was Mark (Clark's) that suggested I could take the whole dose at one time. I really haven't had the itching since I started on the full dose. Before that, I had years of rashing and itching that never went away, and I was getting scarring on my arms. I rarely have itching now.

My gut is a different matter, but that is probably where I am most reactive, and where a biopsy showed increased mast cells. But I am still much better than I was before starting treatment. I didn't even know how bad my GI symptoms where until they started improving. It took some time to bring my reactivity levels down, and I take H1, H2, ketotifen, and Singular to keep things mostly under control. Each med controls a certain group of symptoms, so I pretty much know what to take when things get bad. I take Benedryl sometimes, too, but so far I have made it through without doing Epi, though there are times maybe I should have.

I do know I would be reluctant to stop the ketotifen at this point. Wish they would bring it into the country so it didn't have to be compounded, but at least it is available.