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]
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.
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.
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]
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
sally williams replied to the topic N115 nasal spray in the forum Diagnosis Information and General Questions 1 year, 7 months ago
- 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]
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?
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.
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
sally williams became a registered member 2 years, 2 months 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]