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#1 Sharon T

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Posted 02 November 2009 - 12:18 PM

I'm another newbie to this forum. I was diagnosed with interstitial lung fibrosis in May of this year, and with limited (CREST) scleroderma in August. A recent right heart catheterization found pulmonary artery hypertension with exercise (but not when resting). One of my doctors (rheumatologist at UCLA) has recommended ambrisentan (for which he is doing a study paid for by the drug company to determine the benefits of early treatment of PAH). Has anyone been on this drug? Or others that have helped alleviate PAH?

Thanks for your help,
Sharon T.

#2 Sheryl

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Posted 02 November 2009 - 12:36 PM

Hello Sharon T, and welcome to our ISN forum. Sorry to hear that you are amongst the folks with PAH. Hopefully, you will find out how different people are being treated for PAH. I am anxious to find out more about Ambrisentan and how it helps you. Keep us informed on what benefits you get when taking this, medication.
Strength and Warmth,
Sheryl

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#3 janey

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Posted 02 November 2009 - 01:07 PM

Sharon,

Welcome to the forums. I'm sorry that you are here due to your scleroderma diagnosis and related symptoms, but I'm glad you found us and have posted. I'm not a doctor, but I have done some studying on drugs that fall in the same class as Ambrisentan. Here is a link to the Pulmonary Hypertension Association fact sheet on Ambrisentan.

Ambrisentan falls into a class of drugs called endothelin receptor Antagonists (ETRA). On the ISN endothelin page you find that Endothelin is a protein that helps to regulate contraction and relaxation of the smooth muscle found in the walls of blood vessels and internal organs (except the heart). An overproduction of endothelin, whether by illness or medication, can cause blood vessels to constrict and blood pressure to increase. In scleroderma, it can cause pulmonary arterial hypertension (PAH). ISN. ETRA's help to block the production of endothelin. Bosentan is another ETRA that is used for PH. I've been taking bosentan for 3 years and it's done a great job in reducing my PA pressure and stabilizing my PH with the added benefit of helping to reduce my Raynaud's attack. I haven't seen white fingers in a long time - purple, yes, but I can handle purple. That color usually matches my blouse anyway. :)

I'm glad that you are seeing a specialist. With two lung conditions you need someone who is familiar with scleroderma and its pulmonary issues. Please let us know what you decide and how you are doing. We do have several members that participate in a variety of clinical trials, so maybe they can help out with that type of experience.
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#4 Jeannie McClelland

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Posted 02 November 2009 - 01:28 PM

Welcome to the Forum, Sharon!

I also have ILD and pulmonary hypertension (confirmed by right heart catheterization) and have been on Ambrisentan for close to 2 years. I love the stuff. Posted Image

I've had no discernible side effects and it has brought my pressures down to the high normal range by echo. Although my specialists scoff at me, I tell them I could almost pinpoint the day it kicked in. I went from feeling fairly poorly to feeling much better and being able to do much more too. Long may it continue to work so well!

I wouldn't necessarily be too concerned your specialist is being paid by the drug company to do the study. It's an unfortunate fact of academic life these days that a great deal of basic research is funded by companies that stand to gain from a positive result. It seems to be a given that early detection and treatment of pulmonary hypertension improves both prognosis and quality of life. Although ambrisentan (Letairis) is a fairly new drug on the market (July 2007), it is, I believe, actually a second generation endothelin receptor antagonist, following on from Bosentan (Tracleer) and others. Ambrisentan is a selective antagonist, affecting only endothelin A receptors, whereas bosentan (the older medication) affects both A and B receptors. At any rate, I don't believe its effectiveness is in question and the study your doctor is involved in, as you report it, isn't looking at that. I would guess, and it is just a guess, that the study is looking at how long ambrisentan "delays clinical worsening".

When I was investigating treatment options and wondering if I really needed any treatment at all, I checked out the risks of the various medications in use and their potential benefits. I then read as much as I could about the probable course if I refused treatment. The statistics weren't good and seemed to stress the importance of early diagnosis and treatment. That made that decision easy. I 'failed' calcium channel blockers and of the other options available, ambrisentan seemed to offer the most benefit with the least risk. Taking one tablet once a day was a selling point too.

Of course, any decisions about your treatment are yours and your doctor's to make in partnership, but I hope some of the above has been helpful. I'd be glad to answer other questions you might have.

Best wishes,
Jeannie McClelland
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#5 Sharon T

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Posted 03 November 2009 - 07:37 AM

Thanks so much for all of your replies. I can see already that this forum is a place I will be visiting frequently! I will definitely post my experience with whichever PAH treatment we end up going with. I'm leaning toward the Ambrisentan right now. The only downside that I can see with joining this study is that it will require me to have another right heart cath in 6 months. I'm not fond of any invasive procedures that aren't absolutely necessary. Oh well. Again thanks to all for your input.
Sharon T.