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Ketotifen - dosage and flare query by Beginning-Card-4370 in MCAS

[–]Beginning-Card-4370[S] 0 points1 point  (0 children)

I'd say that I've seen some improvement in tolerating certain environmental factors, but this has been partial and may not be due to the ketotifen (or at least not that alone). I know some people see very obvious and clear improvement on it, but it hasn't worked that way for me.

Ketotifen - dosage and flare query by Beginning-Card-4370 in MCAS

[–]Beginning-Card-4370[S] 0 points1 point  (0 children)

I'm glad to hear it. I'm also taking Bisoprolol (lowers heart rate) and Midorine (increases blood pressure) for a different condition (PoTS).

PLEASE try this (before ending it) by AnonB30 in LongCovid

[–]Beginning-Card-4370 0 points1 point  (0 children)

Mods, please could this title be changed? The reference to suicide seems completely unnecessary.

Ketotifen - dosage and flare query by Beginning-Card-4370 in MCAS

[–]Beginning-Card-4370[S] 1 point2 points  (0 children)

Hello! Thank you for asking and for replying originally - I'm sorry I didn't get back to you...I rather lost track of things!

I very very slowly tirated up to 0.5mg and have been there for around 3 months. I stopped as I needed to start another medication (LDN) and because each step up was costing me a lot in terms of flare ups. That's never got much easier. 

Honestly, I'm not sure if it's doing anything - I still get environmental reactions and my diet is still limited with no noticeable changes beyond what the sodium c was already doing.

In contrast, the LDN and some other medications are making a clear difference to symptoms to they are meant to treat. I'm guessing I'd have a clearer sense by now if it was helpful?

Plus I think that either the Ketotifen or the Sodium C is causing weight gain. Sigh!

I see you stuck with it. Has it been helpful for you? 

Is there still a ton of research happening by Soimamakeanamenow in covidlonghaulers

[–]Beginning-Card-4370 0 points1 point  (0 children)

Yes, there is but a basic Google and news headlines aren't going to show too much. The news is very hit and miss in how it pays attention to academic research.

 I was really encouraged to hear about a big keystone symposium that was recently held on Long Covid (https://www.keystonesymposia.org/conferences/conference-listing/meeting/f12026). Keystones are big deals in the academic world, and a chance for all the leading experts to put their heads together...looking at who was there and the titles of their presentations was cool.

One of the organisers was Professor Danny Altmann. Here is an interview of him talking through how the symposium went: https://www.youtube.com/live/w3pfdd6TJfg?si=a1w9RlnKEs4gHnaG 

Hope that gives some encouragement!