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Dr. Hamilton-Bringham
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Mast cell issues always floating around it seems...
Mary Beth wrote:
Thanks for the information Mary Beth. I'll follow up your lead with the mast cell forum. It's good to hear that ketotifen may be better tolerated. I remember Faithberry; she was on the board when I first joined and posted not so long ago as I recall. And I agree that mast cells likely play some role in many of the issues that come up on this board. It will be interesting to see where research takes this whole mast cell issue in the coming years.
Gloria wrote:
I asked my allergist why we couldn't get it here in the US. He said it was most likely a financial decision on the part of the drug manufacturer. Cost/benefit he said...not worth their money/time to get through the FDA hurdles.
I hope you can find someone to help you with your mast cell issues Gloria. Trying to deal with mast cell issues without the help of a knowledgable physician is difficult. Then when you add in the reality of insurance limitations, it becomes even more challenging. Hopefully with more and more physicians learning about mast cell issues, you will be able to find someone in your area that is at least open to the idea of your having mast cell involvement. That would be a great first step!
Julie
Mary Beth wrote:
There is a pharmacy in Washington state that will get ketotifen for you. I read about it on the mast cell forum. From what I understand ketotifen is pretty well tolerated compared to gastrocrom. BTW, we had another member a while back (faithberry) that had elevated tryptase. She never followed up with a mast cell specialist but I am guessing she had MCAS as well. I actually suspect alot of folks here have some degree of mast cell involvment, but only a handful of us experience extra-intestinal symptoms.
Thanks for the information Mary Beth. I'll follow up your lead with the mast cell forum. It's good to hear that ketotifen may be better tolerated. I remember Faithberry; she was on the board when I first joined and posted not so long ago as I recall. And I agree that mast cells likely play some role in many of the issues that come up on this board. It will be interesting to see where research takes this whole mast cell issue in the coming years.
Gloria wrote:
I've read about Ketotifen. I'll be interested in your response to it. I don't understand why it's not available in the U.S.
I asked my allergist why we couldn't get it here in the US. He said it was most likely a financial decision on the part of the drug manufacturer. Cost/benefit he said...not worth their money/time to get through the FDA hurdles.
I hope you can find someone to help you with your mast cell issues Gloria. Trying to deal with mast cell issues without the help of a knowledgable physician is difficult. Then when you add in the reality of insurance limitations, it becomes even more challenging. Hopefully with more and more physicians learning about mast cell issues, you will be able to find someone in your area that is at least open to the idea of your having mast cell involvement. That would be a great first step!
Julie
