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I would like to hear from others who have been diagnosed with Pulmonary Hypertension and CREST. I am currently on Flolan for the PH and it really has helped me breath but I think I would benefit more with AP.. I would love to get others’ opinion on this. 🙂
Hi The antibiotic approach treats the over riding disease -=-you would still require other meds to control symptoms –point being –antibiotic would not replace the Flolan rather if you decide on an antibiotic approach you would take both —
richieCindy:
Welcome, we are glad you found us, though sorry that you had the need to. I can’t really speak to the issue of Pulm Hypertention, but my daughter had rapidly advancing limited systemic scleroderma (aka CREST). Her first PFT showed 60% and a problem with CO2 expiration. That with extreme Shortness of Breath. She also had really bad Raynaud’s, a digital ulcer that was so bad and had been ther for so long that she was being referred for hyperbaric O2 and if that didn’t work the docs were talkin’ amputation.
She never went on any of the traditional meds other than the beta blockers for the Raynauds (which didn’t work).
she has been on AP for 4.5 years now and she is fully recovered. See the thread titled “A video to share” if you would like to see what she is up to right now.
There are lots of SD folks here on the RBF forum that can share their personal experiences.
Let us know if you have any questions!
Cheryl
Thank you Cheryl for your info on your daughter and how wonderful she is okay. I am now going to a rheumatologist who I don’t think he knows what he is doing. And I find the part where your daughter’s CO2 expiration might be the same with my ProBrain Natriuretic Peptide scores have been as high as 4000 where normal is 190, where i understand it where the CO2 is not leaving. But seems like no one is really addressing this high score and I’ve always wondered if it is related to the scleroderma that I have. hmmm… so much information and can be so confusing. It gives me something to think about.
Thanks again.@cmgreen57 wrote:
where i understand it where the CO2 is not leaving. But seems like no one is really addressing this high score and I’ve always wondered if it is related to the scleroderma that I have. hmmm… so much information and can be so confusing. It gives me something to think about.
Thanks again.YES-the issue was that the CO2 was not expelling and was building up. I cannot remember the name of the specific area of the PFT but when the doctors went over the test with us they definitely associated this with the SD.
Her last PFT, 2.5 yrs ago, showed everything back to normal. But again, she was never officially diagnosed with PH. Although with the other symptoms I am pretty sure that a PH diagnosis was just a matter of time. Her lungs were seriously affected by the progression of her disease and it was seeming to get worse by the day way back then.
Regarding your doctor. I think that our doctors are like a consultant that the CEO of a major company might hire. The CEO will ALWAYS be the CEO and stay in charge and make the decisions. The CEO would never just do what the consultant says to do, the CEO would never just use one consultant for the whole operation. The CEO sees the big picture of his company and no one else will or can. In this analogy, you are the CEO and your body/Health is the company. Personally I think looking at things in this way helps me not to be so frustrated with the doctors, they are just my consultant and I like to hear their ideas, but in the end, I am the CEO and I have the ultimate responsibility to make coordinated decisions about the path and processes we will use for our medical treatments.
Cheryl
Amen to that !!! We have found that YOU need to be proactive in your own health. I do believe I need to find an AP doctor here in NC . When I lived in Ohio I was on AP for a short time and the skin on my arms became ‘normal’ again.. not sooo tight after using minocin.. but I never looked up an AP doc since I move here to NC.. Looks like I need to get my booty moving and do some more research !!
Thank you so much for your advice !! Wonderful, just wonderful !! 🙂
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