Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> New trial in US of Ketotifen for Fibromyalgia "shows promise" http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1345849066 Message started by larken on 08/24/12 at 11:57:46

Title: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by larken on 08/24/12 at 11:57:46

See article http://phoenixrising.me/archives/13083.

Impressively, the article provides lots of background info on mast cells.

Also touches on POTS, exercise-induced anaphylaxis, Chronic Fatigue, Dr Theo at Tufts.

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by Starflower on 08/24/12 at 13:09:10

This is GREAT... not just for people who suffer from fibromyalgia. Maybe the FDA will finally get around to approving a drug that's available in practically every other country on earth. :)

Heather

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by NMLiz on 08/24/12 at 19:11:43

Excellent article--thanks!

Both my partner and I have fibromyalgia and CFS/ME, and now she has also come down with SM, so it's interesting that they may be related.

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by larken on 08/25/12 at 00:38:17

Yes, it is good! Finally, Ketotifen and greater attention to mast cell activation! I had been diagnosed (or misdiagnosed) at various times with FMS and CFS. I also had terrible interstitial cystitis for a couple of years when I was very young (like, age 8 - 10) and still have symptoms every once in a while. Now I believe I finally have a correct diagnosis of MCAD, but it seems to me that they are all related somehow through mast cell activation.

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by Lisa on 08/25/12 at 01:01:29

Yes, these are related. Dr. Ignacio Blanco of Spain is the doctor responsible for finding morphologically changed MCs in Fibromyalgia patients. This finding totally rocked the masto world because up until this time NO OTHER known disorder caused the MCs to change their shapes. So, this raised the question, are there other disorders which can do this, or is Fibromyalgia part of a MC disorder????!!!!! :o Dr. Escribano is one of the very first to recommend Ketotifen to his patients with fibromyalgia! He sees the connection and slowly others are agreeing.

Lisa

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by brigittegriffith on 08/25/12 at 13:19:25

So exciting! I am just diving into all the possibilities and I'm already excited! Lol there is a post on the urticaria society forum on how to actually get Ketiotifen! When I was reading the article, doxepin came up and got me wondering again, is this a good drug for mast cell disease? Does it work differently than the other antihistamines because is breaks the blood/brain barrier? Just wondering, while I'm already on a wonderful cocktail of antidepressant (lol) I'm thinking, why haven't I been on this one??? Two birds with one stone! :D

Title: Re: New trial in US of Ketotifen for Fibromyalgia "shows promise"
Post by Joan on 08/25/12 at 18:03:01

Doxepin is a good medicine for mast cell patients to try. It blocks both H1 and H2 histamine as well as being a tricyclic antidepressant. It can cause drowsiness, so it's important to learn how it affects you before driving or operating machinery. I started out taking it at night, and it was great for sleep, too!