miocean

Pulmonary Hypertension

3 posts in this topic

I had a heart catherization in January due to an abnormal stress test. It showed minor PH. My cardiologist said it was so minor he wouldn't treat it. When I saw my scleroderma specialist last week she looked at my report and said when you have scleroderma it should be addressed as soon as possible. She had me apply for Letairis. I had to fill out an application for it which is the first time I have had to do that with any drug. The LEAP Program for Letairis called me today for my prescription drug medication information and told me they would call my insurance company, get it approved and then have it mailed to me. It should take around 3 weeks. Must be very expensive.

 

I read a little about it online and saw that the liver has to be carefully observed with monthly blood tests. So it is a little dangerous. If the disease doesn't kill me the meds will. Anybody know anything about this drug? Anybody on it?

 

Thanks for your help.

 

miocean


ISN Artist

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Mino sorry to hear about Mild PH too have it, anyways I was wanting to let you know to check out the Pulmonary Hypertension Association they have alot of great information and I belong to the PHA . Good luck to you. Sam


Sam

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miocean,

Sorry to hear about your diagnosis. Like Sam, I was diagnosed with mild PH about 3 years ago. My pulmonologist put me on full dose Bosentan and within a year, my PA pressure was back to normal. I'm now on half dose. Like Letairis, Bosentan can cause liver problems because they are both considered endothelin receptor antagonists. I get my liver enzymes checked monthly. It's been 3.5 years now since I was prescribed Bosentan and my enzymes have stay normal, in fact, low normal (knock on wood :emoticon-bang-head: ). I do drink but only 2 to 3 beers a week, so I try to baby the liver in that manner. So far so good. Hope the letairis works for you.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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