Forum Replies Created

  • sally-williams

    Member
    December 19, 2023 at 3:44 pm in reply to: Pirfenidone (Generic for Esbriet) CostPlus

    The $30.80 is for 30 pills so $92.40 for a month…still a much better price.

  • sally-williams

    Member
    August 23, 2023 at 10:42 am in reply to: Did you get Study drug or Placebo?

    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.

  • sally-williams

    Member
    August 22, 2023 at 4:37 pm in reply to: Did you get Study drug or Placebo?

    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?

  • sally-williams

    Member
    May 16, 2023 at 3:29 pm in reply to: All IPF Clinical Trials

    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.

  • sally-williams

    Member
    December 20, 2022 at 2:29 pm in reply to: Starting out with 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.

  • sally-williams

    Member
    May 3, 2022 at 7:05 pm in reply to: Traveling long distances

    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.

  • sally-williams

    Member
    November 1, 2021 at 3:53 pm in reply to: Remembering if you took Medications

    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

  • sally-williams

    Member
    October 21, 2021 at 3:10 pm in reply to: N115 nasal spray
    1. 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❤️

  • sally-williams

    Member
    April 30, 2021 at 3:35 pm in reply to: Tyvaso for IPF

    Rob, is Dr Schwartz at National Jewish? I see a Michael D. Schwartz listed..same man?

  • sally-williams

    Member
    April 20, 2021 at 2:24 pm in reply to: Leg muscle weakness side effect of OFEV

    I do not suffer from that, bu I do Pilates and maybe that stretching helps. Good luck, not walking isn’t good.

  • sally-williams

    Member
    April 15, 2021 at 3:23 pm in reply to: New to IPF

    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.