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Are You Not on Any FDA Approved Treatments for PH?
Based on previous surveys we’ve conducted, we know there is a subset of PH patients who are not on any treatment for their disease. We want to understand better what the possible reasons for this may be. Your experience and reasoning may help the greater PH community understand more about living with this chronic disease.
Some may have had PTE surgery or other reasons why they are not on any FDA approved PH treatments. If you or a loved one has PH and is not on any PH treatments, we need your thoughts. Please help us as you share your thoughts on this topic by taking this short survey. To take the survey, click the take the survey box. This is only available for US residents. Thank you for your time and for sharing your experience with us.
Click here to take the survey -
7 Replies
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Jen, while my current meds are all FDA approved, My Internist has proposed an “experiment” for me. When I finally complete the titration of my Uptravi we are going to recreate a Nutritional Study that was done for PAH. I don’t know how many of us are taking the amino acid L-Arginine, as it is a precursor to Nitric Oxide. At the present time I take 1000 mg of it a day. The study gave the participants 9 x that in measured increasing doses for 6 mos. The results were pretty amazing. My Pulmonologist has agreed that I can try it when I am stabilized on Uptravi. Should I be taking the survey?
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Hi @mainegal, thanks for your interest. I would say no since you are still on Uptravi, and that is an FDA approved treatment. With that being said, I am curious to hear more about this “nutritional study” with L-arginine. I am not on it but hope to learn more. Of course, anyone interested should check with their PH doctor even though it is a nutritional supplement.
What dose are you now on of Uptravi? I know that you are titrating. Will you be going to 1600mcg?
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Hi Jen, My current dose of Uptravi is 800. We are trying to go all the way to 1600, but the current bp problems caused by my kidneys is making me currently unstable, so we will wait to increase to 1000 until definitely after the kidney stent surgery, which is Tuesday. We possibly will have to wait awhile for the stent to really take effect.In the meanntime I will hold at 800. My pul doc really wants me to try to get to 1200.
I would be happy to copy the information about the L-Arginine studies in a private email. I don’t think it is appropriate for me to copy others work directly on an open forum. Looking forward to hearing from you.Sally
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I just wanted to share this poll again. This is for any US residents that are not on any FDA approved treatments for PH. This may be due to PTE surgery, transplant, or PH associated with other diseases. In that case, you are taking FDA meds but not for PH, if that makes sense. You may be on a BP med and oxygen or a blood thinner, etc., but none of the PH medications. You could also be on no meds at all, and that would be the perfect opportunity to consider taking this short poll.
Thanks again.
Click here to take the survey -
Anyone else here not taking any FDA approved treatments for PH? Caregivers can take this short poll. If this is you, please help us out by sharing your experience by answering a few brief questions. Thanks again.
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I just wanted to bump this up again if anyone who is not on FDA treatments for PH can take this short poll. If this is you, please take a few minutes to complete this short poll.
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Hey, y’all, if you or your loved one is not on any FDA approved PH medications or treatments, could you take this short mini poll? Please help us out by sharing your experiences. Thanks.
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