I'm in love with Ketotifen!

[Gingergrrl]

Gingergrrl or others--did you try the OTC eyedrops before you got the compounded version? I am wondering if that is reasonable way to test it out before go to trouble of compounding--I have MCS and most things can't tolerate so I don't want to bother with doctor to get it unless think there is good chance it will be tolerated. thanks for any thoughts....

@xrayspex I actually started with the pill form of Ketotefin in summer of 2015 and did not even know the eye drop form existed until about a year later. For me, the eye drop form would not have been enough at the time that I started it b/c my MCAS was so severe (back then). It's in remission now but I continue to take Ketotefin 2x/day and a few other MCAS meds b/c we do not want to mess with something that is working. I use the eye drops (Zaditor) as needed and they help my eye allergies in general and I tolerate my contact lenses a lot better now. I had used a prescription eye drop for most of my life and actually like the Zaditor better which is OTC. Hope this helps!

 

[xrayspex]

thanks for the info! another thing to ponder good to know it helps some folks!

 

[ebethc]

Doesn't ketotifen cause weight gain? I thought this was one of the common problems w it...

@Gingergrrl - are the eye drops compounded? Maybe this is a better way to go w drugs that cause weight gain because they're not going through GI

 

[Gingergrrl]

Doesn't ketotifen cause weight gain? I thought this was one of the common problems w it...

I have had weight gain but in my case we suspect it's a combination of Ketotefin, Cortef, being able to eat close to 100% normal foods again, and being 24/7 in wheelchair. I was quite underweight due to MCAS in 2015 but now about 15 lbs overweight which really bugs me.

@Gingergrrl - are the eye drops compounded? Maybe this is a better way to go w drugs that cause weight gain because they're not going through GI

The eye drops (that I buy) are not compounded and are from CVS (a U.S. pharmacy) and are called Zaditor. They are OTC and are not expensive. I used a prescription allergy eye drop called Elistat for about 20 years and once I found Zaditor, I stopped the prescription and never needed it again.

I take Ketotefin (pill form) and my other MCAS meds just once a day now and can eat without them. The exceptions in which I take them 2x/day is if I eat in a restaurant or test a new food. Will probably take Ketotefin 1x/day for the next few yrs b/c it works so well for me and don't want to mess up something that is working.

 

[ebethc]

@Gingergrrl

Good to know re the eye drops! They wouldn't cause weight gain (unless there's some crazy thing I don't know )

Do you think that the eye drops help brain fog at all? I feel like if my eyes & sinuses are good, my head feels so much better, and then my whole body can follow.. it's like this domino effect w my my eyes/sinuses (also my gut, but the brain fog kills me...)

Thanks

 

[Gingergrrl]

Good to know re the eye drops! They wouldn't cause weight gain (unless there's some crazy thing I don't know )

I can't imagine that an eye drop could cause weight gain (and would not worry about this if it helps you)!

Do you think that the eye drops help brain fog at all? I feel like if my eyes & sinuses are good, my head feels so much better, and then my whole body can follow.. it's like this domino effect w my my eyes/sinuses (also my gut, but the brain fog kills me...)

I have never actually had brain fog and use the Zaditor (Ketotefin) eye drops for allergic reasons. I used prescription eyes drops for at least 20 years (many kinds) and these eliminated them. I would get bumps on the inside of my eye lids (not visible or contagious) but they made it extremely difficult to wear contact lenses. Since using Zaditor, I can wear contacts as much as I want and no longer feel like there is sand in my eyes and eye itching is gone. So I think we'd be using them for different purposes.

 

[Strawberry]

Do you think that the eye drops help brain fog at all?

Have you tried Neuroprotek? I notice it helps my brain work better.

 

[ebethc]

Have you tried Neuroprotek? I notice it helps my brain work better.

It was disappointing ... no more useful than quercetin, which is great but not enough

Have you tried ibudilast?