tmgilbertpt

PAH Treatment And Coumadin

6 posts in this topic

Hello,

 

My pulmonary doctor is going to start me on treatment for PAH. I am not quite sure which drug I am going on - awaiting insurance approval. But he mentioned that I needed to be on coumadin while I am underoing treatment for PAH. Has any other MD's prescribed this for you guys getting treatment for PAH? THanks for your input.

Tammy

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Tammy,

I'm certainly no doctor, but I've never heard of coumadin being prescribed with PAH treatment. Coumadin (Warfarin) is an anticoagulant, not a blood thinner. It's used to prevent the clotting of blood for people with APS and heart fibrillations. I take it for my atrial fibs, not my PAH.

 

Please ask your doctor WHY he is prescribing this. Coumadin must be carefully monitored to make sure that your blood doesn't lose too much of its clotting ability. When I first started I was getting a PT/INR blood test weekly. Now I get one every 2 weeks. My INR keeps going up and down because it's greatly affected by diet, other medications and many supplements. Every 2 weeks my dosage changes because the INR is either too low or high.

 

Please be sure to ask your doctor the reason for the coumadin and then share his answer. BTW - what PAH medication is he prescribing? I'm sorry you're having to deal with this. I hope the meds work for you.

 

Big Hugs,


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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Janey,

 

I actually did some research on the coudamin used in the treatment of PAH. There were some studies done by the Mayo clinic that found patients who did use the coudamin in combination were found to live longer. There were a couple other drugs they use that were mentioned. I did not get a chance to read why though

 

tammy

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Tammy,

Nevermind - I found what you were referring to at PH Central. It mentioned a retrospective review of Mayo patients over the past 15 years. Yes - it found a significantly higher survival rate! Maybe I shouldn't be complaining about having to take Coumadin. It's interesting, the Pulmonary Hypertension Association states "Warfarin has not been well studied in PAH but uncontrolled studies suggest that it may be helpful for patients with idiopathic PAH." Well, maybe the time has come! I'm impressed with your doctor. He obviously already knew about this. It will be interesting to know how you do with the combination therapy. I'll keep checking in on you over the next 20 to 30 years. :)

 

Big Hugs,


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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Yeah on the pha ssociation message boards many people list their treatments in their signature. I see Coumadin mentioned very frequently.

 

I myself am not on it but I know it seems pretty common.

 

Maddy


Maddy

38 yr old mommy to 2 boys

Raynaud's, CREST diagnosed '96

Pulmonary Hypertension diagnosed Oct '07

GERD, Inefficient Esophageal Motility diagnosed Jan '09

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