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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Doing well on Ketotifen http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1348751218 Message started by TallBird on 09/27/12 at 02:06:58

Title: Doing well on Ketotifen
Post by TallBird on 09/27/12 at 02:06:58

Hi Everyone

Have been taking Ketotifen for a couple of weeks now and am already starting to feel more stable - able to do more things like shopping, taking my dogs for a short walk, going out into town for longer etc. :) First day I took it I felt really drowsy then fell asleep - lost three hours - it was heaven! :D didn't happen again though.

I don't feel as ill or as 'jittery' as I used to (please don't ask me to explain what I mean by jittery, but its that horrible feeling that precedes a crash/reaction :'(). I'm also about to increase the Ketotifen to 2mg twice daily from 1mg twice daily at the request of my consultant. I also take Fexofenadine/Allegra 180mg x4 daily, Singulair and Ranitidine. However, there have been two occasions in the last week when the Ketotifen did not work at all and I felt very ill again - I don't know what triggered me but suspect it was due to monthly hormonal changes as these are a known trigger for me.

TallBird

Title: Re: Doing well on Ketotifen
Post by PamH on 09/27/12 at 04:47:32

Good for you Tallbird! It great that it is working for you! :)
I think the monthly hormonal issues are a trigger for me and a lot of women! The kicker is you can't avoid them, just got brace for them. I try to stay close to home and do too much. As if a period isn't bad enough, it has to magnify everything! >:(
Take care,
Pam

Title: Re: Doing well on Ketotifen
Post by Daffodil on 09/27/12 at 06:19:57

Hi Tallbird

I am pleased you are doing so well on Ketotifen and are becoming more stable. I am just about to start so hope I can tolerate it. I pick it up tomorrow as the Pharmacy did not have it in stock. I will let you all know how I get on.

Anne

Title: Re: Doing well on Ketotifen
Post by mikev on 09/27/12 at 06:23:56

Tallbird:
That is good news, as I'm more stable on it as well. Just remember that you're still going to have some flare ups. The advantage that I've seen is my flareups don't last as long being on ketitofin.
MikeV

Title: Re: Doing well on Ketotifen
Post by Julie M. on 09/28/12 at 05:28:25

Hi all,

I'm about to go on Ketotifen (finally!) but need updated info on where to get it. The most recent thread I could find about it here was from last year. (Maybe I missed more recent info.)

So, if it's not too much trouble could I ask others to weigh in on where they get their Ketotifen. I need to get on it as soon as possible, so I thank you in advance!!

Julie

Title: Re: Doing well on Ketotifen
Post by PamH on 09/28/12 at 12:00:32

Julie,
I get mine at Clarkes pharmacy, in Bellevue, WA. I live in Indiana, they ship it to you! Phone number is 1-800-480-3432. You have to send them the script. Then they do the rest!
Pam