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Dlco? Pulmonary Hypertension PHT? Tyvaso?
Age 84 and still looking for answers. Has anyone been taking Treprostinol, Tyvasol, or have any experience with it that can be shared??
I just created a table for the last 7 years showing test results from PFT tests, FVC, DLCO and RVC and their relative movement (downward). That is until last fall and this year, where I notice a nice burp upward in the DLCO% since last fall, which has otherwise headed south to about 21%. The only thing really done last summer was to have a stent put in, and which I seem to feel had a lot to do with this. Maybe my breathing is just a bit easier…maybe. So now I do believe the stent does have something to do with it and it makes me wonder am I doing things that will help compound this.
Yes exercise can have an extraordinary effect on DLCO from what I have read, but one of my doctors mentioned Tyvaso (for PHT) which is apparently now in a breathable form? Also the well used Microsoft Co-Pilot says some very nice things about Tyvaso (Treprostinol) having promise in improving lung function (breathing etc) including IPF as a vasodilator which relaxes and widens blood vessel in the lungs. My FVC and RVC have had a decline over a bunch of years but maybe the ability to process oxygen (DLCO) is my key to better breathing? I am going to pursue this further and see if the Treprostinol and even Micophenalate might be a good combination. Any input?
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3 Replies
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I’ve had IPF for almost 10 years and went on Pirfenidone almost 3 years ago. I started down this road in 98 with my first heart attack and now have 5 stents. I was diagnosed with Pulmonary hypertension last October and went on Tyvaso then after taking the build up doses I got up to 48mg 4xdaily but it was hard on my digestive system so backed down to 36MG.
I realize that might be more background than you need but I’ll just sat the Tyvaso has helped. the 15-20 min of time after inhaling it are pretty comfortable but it’s not long lasting. My numbers have not improved significantly and we are actually going to try and increase the dose to 48 then 64 over the next 2 months.
That’s just my story, I hope it helps. Good Luck Bro.
George
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Thanks Richard, was the Tyvasol lasting much longer when you were at the higher doses or is it kind of like the Albuterol asthma inhalers where the effect doesn’t seem to be very long regardless.
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I am also at my max of 5 stents as of last August, and I seem to see my DLCO improving a little bit. I have begun to wonder if 3 open chest/open heart surgeries may have had an impact on scarring and maybe even on the diaphragm tightness.
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