Ketotifen

[rosie26]

I was trying ketotifen for complex GI problems in the hope that mast cell activation in the GI tract was a big part of my woes. I had ketotifen made up as a liquid so I could easily manipulate the dose (with the calibrated syringe that came with it) but couldn't cope with it even at 0.25 mg once a day after a couple of days. Once I'm sensitized to something, it makes no difference if I play around with dose any more and I get a reaction within an hour so no, I'm not taking it still.

Was it too sedating @kangaSue ?

 

[kangaSue]

Was it too sedating @kangaSue ? I will try it in the next few months. Extra tight with finances at the moment.

@rosie26 No, I didn't find it sedating although I fall asleep at the drop of a hat so might not have noticed (I don't have ME/CFS either).

I get a churned up stomach with most things, even with putting meds through my feeding tube which I also tried with ketotifen as the usual oral route caused this too with this med. When this happens, persisting with the med or supplement will then cause me severe abdominal pain. I hoped that part was the result of mast cell activation in the GI tract, don't know now if a mast cell stabilizer makes no difference either so left to assume it's more to do with having chronic intestinal ischemia.

 

[Jennifer J]

He said that the Ketotifen eye drops could help w/smells and that some people actually used them as a nose spray.

@Gingergrrl, this is good to hear. How do you use it as a nose spray? I haven't seen the MCAS specialist yet, hopefully within the next couple of months. I did buy some Ketotifen eye drops that I want to try to see if they help. The incense outside my room causes me lots of problems and hurts so bad. Thank you, if you can let me know. (Also, wishing you the best with your results. Been thinking of you. Hug.)

It is EXTREMELY sedating so do be careful. Some people, like me never lose the sedating effect, others like Ginger could take larger doses. I

Like most meds for MCAS it can take a while before you see improvements - sometimes many months. If it hasn't helped symptoms after say 3-6 months then I would say there is no point continuing

Thank you @justy. Both of these things are good to know.

 

[Gingergrrl]

@Gingergrrl, this is good to hear. How do you use it as a nose spray? I haven't seen the MCAS specialist yet, hopefully within the next couple of months. I did buy some Ketotifen eye drops that I want to try to see if they help. The incense outside my room causes me lots of problems and hurts so bad. Thank you, if you can let me know. (Also, wishing you the best with your results. Been thinking of you. Hug.)

Thanks @Jennifer J and I actually did not end up using the Ketotefin eye drops as a nose spray and it did not work for me that way (even though my MCAS doc said that he has some patients who do). The bottle is really built to be an eye drop and my attempts to use it as a nose spray were unsuccessful (but it works great for me as an eye drop and I use it 2x/day).

 

[Jennifer J]

Thanks @Jennifer J and I actually did not end up using the Ketotefin eye drops as a nose spray and it did not work for me that way (even though my MCAS doc said that he has some patients who do). The bottle is really built to be an eye drop and my attempts to use it as a nose spray were unsuccessful (but it works great for me as an eye drop and I use it 2x/day).

Thank you, @Gingergrrl. Regarding your attempts to use it as a nose spray (that were unsuccessful), how were you instructed to do that? Just squeeze it, hold your head up straight?, etc. or drop it in your nose? Just curious how it needs to be done and how you figure out dosing. Thank you if you can share anything about how one would try to go about this.

 

[Gingergrrl]

Thank you, @Gingergrrl. Regarding your attempts to use it as a nose spray (that were unsuccessful), how were you instructed to do that? Just squeeze it, hold your head up straight?, etc. or drop it in your nose? Just curious how it needs to be done and how you figure out dosing. Thank you if you can share anything about how one would try to go about this.

He didn't give me any specific instructions vs. just to try it as if it were a nose spray vs. an eye drop. It did not work for me and was challenging to get it into my nose b/c of how the bottle was shaped. I finally did one time but it burned my nose and I reacted badly to it. I do not recommend it this way (but mentioned it b/c my MCAS doc has a few patients who report it helps them w/reactions to smells).

I use Zaditor strictly as an eye drop, which is the only way that I would personally recommend it, from my own experience. I hope this helps and wish I had something further to add but really don't! For whatever reason, since doing IVIG, I no longer get reactions to food or smells (but still have MCAS and very high prostaglandin levels and will avoid IV contrast dyes, certain anesthesias, etc, for the rest of my life). And no idea what will happen once I stop the IVIG .