Chris

hi kim, what haritaki dose do you take?  I got 750mg and take one a day.

thanks to everyone for the replies it really helps.

Congrats Kim!  Was hoping for you to get a good result. Do they also check your PFT? In my case they are watching the DLCO.  Also, how long before you think the Haritaki made any difference in how you feel? My lungs feel uncomfortable a lot and the cough comes and goes.

Thanks Kim. I ordered some from Amazon after reading up on it and making my own decision. It claims to be a beneficial supplement so why not. Also just started low dose zinc and NAD+. It’s important to note that many things have been cured in mice that didnt translate in people. But, who knows!  Be interesting to see your CT result. I have one…[Read more]

Kim, can u send a link to that? I cant find it through google. Thank You!

Thank you for your service Mike to our country. I had 2 veterans in our family, one WW2 medic Italy/Germany, one cold war (atomic vet!).  It’s a big regret I didnt sign up myself and I look up to everyone who has served.

Hi Folks, I was just re-reading this thread, very helpful.  As an update, despite getting the booster, I caught symptomatic Covid in January. Took paxlovid and was better in 1 day, but when the 5-day pax ran out, I got sick again but again only mildly and it cleared on its own. My chest symptoms are unchanged. Thank God

Everyone is different, even with the same flavor of PF. There is also a lot of research and a couple new meds coming online in next few years. One of which is considered a “breakthrough” drug by FDA, and is in Phase 3 trials right now.

Here is a big study that has a lot of info on this.

QUOTE:  A recent analysis from the US Medicare database…[Read more]

Some patients dont have side effects from one or both of.  Have to try first.

Hi Denise, how did your treatment plan change with the diagnosis from the biopsy? I dodnt even think there was much treatment options beyond monitoring, ofev/esbriet and oxygen if needed? But I’m new to this and we dont know what caused my PF yet.

I read somewhere that there is a slight risk of biopsy triggering exacerbation. But this is a question for at least 2 docs, if they don’t concur, maybe get an appt with a 3rd. When I get bad, if I were told a lung transplant were dependent on a biopsy, obviously that weighs heavily in favor. But I would ask “if you’re removing my lungs anyway, why…[Read more]

This gene development doesnt look like it went anywhere since 2017. Maybe in research it’s helping. Not sure.

It’s the OTHER post about a new med BI 1015550  that is now in Phase 3 trials. Here’s the link:

New Treatment in Phase 3 looks like it might be promising – Pulmonary Fibrosis News Forums

This one I found out was published in 2017, and cant find more as yet. I think this is a longer way off but it does appear they may have found a gene – AKAP13 -that directly contributes to fibrosis, and other research is working on a way to shut that down. When I was in school years ago, they told us that the only gene therapy in use was to halt…[Read more]

Well I got the covid booster. Already had flu vax in Oct.  Been wearing N95 when in crowded spaces like stores or when working near dust etc.  Trying to get a little more exercise too. Not much more I can do until the followup imaging and tests in the Spring.

Thanks Rand, I dont have IPF yet, nothing diagnosed. Next Spring we repeat HRCT and PFTs etc.  It could well turn out to be that, but at this point could also be scarring from almost anything.

Even though it barely shows, and lungs sound good, I can “feel” my chest is not right. I wonder if this is always the case with PF? Does it always feel…[Read more]

hi adele, I had a bunch of blood work,

ANTI SCLERODERMA, MYOMARKER PANEL 3, SEDIMENTATION RATE, AUTOMATED, CYCLIC CITRUL PEPTIDE AB, IGG, RHEUMATOID FACTOR SCREEN, ANTI NEUTROPHIL CYTOPLASMIC ANTIBODY, anti smith antibody, scl-70 antibody, smooth muscle antibody screen, antibody nuclear hep2, .

I dont think these test turned up anything.