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What are your numbers before and during treatment?
I am new at this PAH deal, just got diagnosed in November. I am wondering how much improvement I can expect after/during treatment.
I had a right heart catheterization and my pressure was 60. My lungs are working at 30% capacity.
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5 Replies
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Hi Roger. When I was diagnosed a few years ago my pressures were 27/28, so not very high. I’ve been on ambrisentan and alyq, and a recent test showed my numbers at 25 – which is the highest number to still be in the normal range. No one has ever told me what capacity my lungs are working at, but I have had tests that show I have some damage/scarring in my lungs. Best wishes for a quick improvement on your numbers once your doctor(s) find the right medication for you.
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Thanks for the info. Sounds like you are doing well!! Glad you got your numbers down so low.
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Hi Roger,
When I was diagnosed (2 1/12 yrs ago) my pressures were also 60. I was prescribed Adcirca. That worked out okay for almost a year. Then my pressures went to 63. We decided to add Uptravi last June. Uptravi is a drug that you start out with a very low dose (200 mcg) and work your way up weekly (hopefully, sometimes it took more than a week) to the maximum dose of 1600 or whatever amount you can tolerate. By September, while still working my way up (was at about 800) I had my annual echo. My pressures had dropped to 40!! I finally landed at 1400 around December thanks to the help of the Accredo nurse, who visited weekly. The route was long and arduous. But the results were worth the major effort. I am looking forward to my next Echo in August to determine if I dropped any more, stayed the same or the disease is progressing. I am optimistic. While I am by no means “cured” my quality of life is 100% better. So all the best to you. The beginning was the hardest. Sally
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Wow you dropped your pressures quite a bit!!! Hopefully I can do that too. It just takes a long time for me to get a new drug approved by my insurance co. They are trying Bosentan next.I had problems with Ambrisentan.
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Hi @mainegal, like you, I credit my Uptravi for helping me the most. Your pressures have really dropped quite a bit. I love hearing test updates. It is so kind of you to share this with others to offer hope. I know that many will appreciate this share. Thanks for adding so much to our forums.
@wheeldog, I know this can be frustrating as the insurance process sounds like it is taking some time. I hope that bosentan will help you.
Please keep us posted on this process and how we can best support you.
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