Comments on: Hype http://www.kevinmd.com/blog/2004/10/hype.html Tue, 14 Feb 2012 16:32:00 +0000 hourly 1 By: Anonymoushttp://www.kevinmd.com/blog/2004/10/hype.html#comment-54550 Anonymous Thu, 18 Aug 2005 03:28:00 +0000 http://clients.emmense.com/kevinmd/2004/10/hype.html#comment-54550 I too have mastocytosis. For us at least leukotriene inhibitors really make sense...<br/>Jan I too have mastocytosis. For us at least leukotriene inhibitors really make sense…
Jan

]]> By: Carriehttp://www.kevinmd.com/blog/2004/10/hype.html#comment-51706 Carrie Sat, 23 Oct 2004 07:08:00 +0000 http://clients.emmense.com/kevinmd/2004/10/hype.html#comment-51706 I can see what you're saying. But here's something to think about. <br /><br />My disease is very rare. Drugs don't work on me the way they are intended, if at all. Many fellow mastocytosis patients experience the same difficulties. My own GP looks at me like I have two heads when I tell him some of the symptoms I get when he tries things out to help me. 98% of the time he says "i've never heard of that from anyone or anywhere else". Well, welcome to the world of rare disorders.<br /><br />I take Nexium and consider it a lifesaver because none of the other meds of that class work. I take Singulair mostly to help with the fatigue. Those of us with mastocytosis consider both these drugs to be crucial for quality of life. Now, they aren't marketed to those with rare disorders because there's no money in that. But I'm glad all the same that they exist.<br /><br />Leukotrines...sigh...I am so not a doctor. LOL Wish I was so I could understand how mast cells really work or at least get in on the research about mast cells. I can see what you’re saying. But here’s something to think about.

My disease is very rare. Drugs don’t work on me the way they are intended, if at all. Many fellow mastocytosis patients experience the same difficulties. My own GP looks at me like I have two heads when I tell him some of the symptoms I get when he tries things out to help me. 98% of the time he says “i’ve never heard of that from anyone or anywhere else”. Well, welcome to the world of rare disorders.

I take Nexium and consider it a lifesaver because none of the other meds of that class work. I take Singulair mostly to help with the fatigue. Those of us with mastocytosis consider both these drugs to be crucial for quality of life. Now, they aren’t marketed to those with rare disorders because there’s no money in that. But I’m glad all the same that they exist.

Leukotrines…sigh…I am so not a doctor. LOL Wish I was so I could understand how mast cells really work or at least get in on the research about mast cells.

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