Anyone here on Ketotifen?

Aerose91

Veteran Member

Joined : Feb 2016

Posts : 1527

Posted 11/3/2019 6:55 PM (GMT -5)

I'm on 13 antihistamines & mast cell stabalizers now but my MCAS is really bad so I'm starting ketotifen this week. Did it make anyone drowsy? Have any positive effect?

saraeli

Forum Moderator

Joined : Jan 2019

Posts : 3827

Posted 11/3/2019 8:20 PM (GMT -5)

I'm wondering about Ketotifen, too!

Aerose, 13 seems like so many! I'm sorry you are still working to find relief despite so many things. Do you have medical folks knowledgeable about this stuff? Seems like they are not easy to find. I'm wondering what the protocol is when MCAS is stubborn.

jb1994

Veteran Member

Joined : Sep 2018

Posts : 1575

Posted 11/3/2019 9:32 PM (GMT -5)

Made me gain weight instantly. It's expensive as butt too.

WalkingbyFaith

Veteran Member

Joined : Aug 2017

Posts : 8239

Posted 11/4/2019 9:38 AM (GMT -5)

Have you started the disulfiram? Is it making the MCAS worse?

dmw52

Regular Member

Joined : Jul 2010

Posts : 370

Posted 11/4/2019 10:54 AM (GMT -5)

I have been on ketotifen for several years. It helped with sleep (could only sleep 2-3 hours a night ), it stopped the weight loss, ended the fatigue, helped with depression. I only take 1mg at bedtime.

jb1994

Veteran Member

Joined : Sep 2018

Posts : 1575

Posted 11/4/2019 9:04 PM (GMT -5)

@WBF me? I'm not on disulfiram

Aerose91

Veteran Member

Joined : Feb 2016

Posts : 1527

Posted 11/4/2019 10:02 PM (GMT -5)

I haven't started the disulfiram yet. I was going to get straightened out on the Ketotifin side cell it's the past mast cell stabalizer, then start the DSF

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