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sally williams

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@sally

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    sally williams replied to the topic All IPF Clinical Trials in the forum Clinical Trials 2 weeks, 5 days ago

    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 st…[Read more]

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    sally williams replied to the topic Starting out with Esbriet in the forum Esbriet (Pirfenidone) 5 months, 2 weeks ago

    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.

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    sally williams posted a new activity comment 6 months, 1 week ago

    Take the Esbriet even slower then recommended to give your body a chance to adjust…back off if you have to. I took almost 2 months to get to 3 three times a day.

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      Garry Garcia replied 6 months, 1 week ago

      Thank you Sally, out of all these people you and hristie were the ONLY two to respond.
      I am doing exactly as you recommended. I still haven’t gone to three caps three times a day, I’m still in two. We know our bodies better than any schedule or chart that says exactly on this day you will do this.

      Three months sounds. Ore realistic…this stuff…[Read more]

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    sally williams replied to the topic Traveling long distances in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago

    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 hour…[Read more]

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    sally williams replied to the topic Remembering if you took Medications in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    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

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    sally williams replied to the topic N115 nasal spray in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    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…[Read more]

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    sally williams replied to the topic Tyvaso for IPF in the forum Clinical Trials 2 years, 1 month ago

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

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    sally williams replied to the topic Leg muscle weakness side effect of OFEV in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago

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

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    sally williams replied to the topic New to IPF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 1 month ago

    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

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    sally williams became a registered member 2 years, 2 months ago

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      Christie Patient replied 2 years, 2 months ago

      Welcome to the PF forums Sally, we are happy to have you! 🙂

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