Peggy Anderson
Forum Replies Created
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Thanks I appreciate all new info!
Peggy
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I am not sure if I am waiting for tyvaso … I too am in good shape but got about ten years on you. I was diagnosed in 2019 and in April of this year I was in normal range for FVC. I lost 30% lung capacity over the summer. I too used to bike and ski and run so was in good shape. I had biked 1000 km the summer of 2019 in Ottawa I had a PFT September 2019 and HRT Cat Scan and apparently I lost some lung functioning but it came back and they could not determine why as it never happens. I am hoping it happens again as I am on POC oxygen but requiring less oxygen now.
How do you get in Phase 3 …..I assume I am starting Phase 1. All I know it is a nose spray Trepostinal. Getting an Echocardiogram tomorrow as not sure about the measurements of Pulmunary Artery. Have not had arterial blood pressure done but myBP is like a schoolgirls as low never a problem.
Have you heard of Aloft another trial by Squibb Meyers ….it claims to lower already reduced lung functioning by up to 69%. It s a short term treatment as well maybe six months…… I am very interested in that trial result. It is in final phase.
Like you I do my homework and have got the ear of Respirologist. I have fought this time hard to improve my exercise capabilities as my life does depend on it. Now trying to figure out the oxygen for cold weather as POC can’t handle it. Trying to get continual flow in the size of wine bottle with a regulator and it goes in backpack! Never say never!
Peggy
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Thank you in advance
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Hi Pete
I am in Nova Scotia in Canada and I am waiting to get in this trial. The trial was suppose to be approved to go ahead in September this year however a hurricane prevented the team from coming from the USA So I am still waiting. I have IPF with a loss of 30% lung function after either and infection or inflammation this summer. They really don’t know what caused it. I was put on Prednisone two rounds but baseline did not change. I was on Ofev at the time now on Esbriet so time will tell if there is any improvement.
Just wondered what condition initiated your referral for this trial? Have you seen or felt any improvement? Also who is Dr
maio? Spelling might be wrong….
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I am newly diagnosed with IPF and I seem to have a cold sneezing and coughing but clear discharge. I am not sure when to go to a doctor for assessment? I do not have temp but a bit nauseated….