sally-williams
Forum Replies Created
-
sally-williams
MemberDecember 19, 2023 at 3:44 pm in reply to: Pirfenidone (Generic for Esbriet) CostPlusThe $30.80 is for 30 pills so $92.40 for a month…still a much better price.
-
Thank you Pete, will talk to my doc. I have been participating in trials since diagnosis, but the other trials didn’t pan out…keep up the fight. We WILL win.
-
I too am on the Tyvaso trial and they have offered the open label upon completion (six more months). If the trial is not over at that time, should I take the extension if I don’t know if the drug was beneficial for IPF?
-
I am participating in the Trepostinil trial. I am in week 10 of 1 year. Pretty easy, inhailing the drug or placebo 4 times a day. Not too many side effects, occasional headache, dizziness. This is my second trial. I believe that we need to do whatever we can to get rid of this dread disease. I only participate in the ones that allow me to stay on Esbriet.
-
I have been on Esbriet for almost a year. I think the key is a really gradual increase in the number of pills per day…it took me over 2 months to get up to the full day dosage. Good luck.
-
Allen, I believe that since you live at a fairly high elevation and a river cruise will be at sea level, you should be fine without supplemental oxygen. I live at a slightly lower elevation and always feel fantastic at sea level. I say don’t worry about the flight. I fly fine without oxygen, although my longest flight has only been 4 hours. Enjoy life while you can, that’s my mantra.
-
Count them out in the morning and place them in 3 small containers…I have 3 very small saucers that I use, easy to see right away if I need to take the next dosage
-
- In a Phase III Clinical Trial with patients with Pulmonary Fibrosis, there was a statistically and clinically significant improvement in all lung functions, compared to baseline, including an increase in FEV-1, SaO, FVC, FEV-1/FVC ratios (from 52% to 86%) and a reduction in coughing and fatigue.
Very exciting results, I believe they are now looking for a drug company to manufacture the spray…so hopeful❤️
-
Rob, is Dr Schwartz at National Jewish? I see a Michael D. Schwartz listed..same man?
-
sally-williams
MemberApril 20, 2021 at 2:24 pm in reply to: Leg muscle weakness side effect of OFEVI do not suffer from that, bu I do Pilates and maybe that stretching helps. Good luck, not walking isn’t good.
-
To Steven and Christie, Anecdotal information. My brother had a kidney transplant due to a hereditary disease. (Polycystic kidney). After 12 years there has been no sign of cysts.