how do you check telemere length?

The Fibroneer Phase 3 trial ends in November. Its an FDA breakthrough drug (speedier process). According to this “lengthy review process after Phase 3 completion that can take several months or longer” so it should be available early next Spring IF the results show it works as well as it did in Phase 2 (where it worked very well). This is…

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My pf situation is mild currently.  But I keep an eye on my O2.

I have a question, sometimes when I least expect it, I pop the oximeter on my finger and it reads very low, but quickly climbs up to 90s within 10 seconds. Not every time by any means just sometimes. Is this normal for these things to do this?

 

thank you

 

 

going by this, the survival looks a little better at other centers

Transplant Centers (srtr.org)

cool thanks! I saw them too. what do you do for parking and congestion toll pricing they have now? do u park there, a pay lot, or outside the city?

I have seen advice says “get with a lung center” and on the list for a transplant early (if interested in that option) with fibrosis, as the disease can be unpredictable. Any recommendations?

The world’s first ever AI-generated small molecule drug has completed Phase 1 trials and was “well tolerated”.

Guess what it is going to be for?

new (better) drugs are coming, a lot of research is ongoing.  🙂

Dont think I had covid before this, and was vaxxed literally from day 1. But I did get covid last January, thankfully was given paxlovid and it was mild.  Always for decades had an issue with dry cough periods (sometimes lasting months) which they called reactive airway disease which is kind of like a light athsma. Then last year started with… Read more

Lee that sounds awesome. In all my “research” it seems while fibrosis decides for itself who stays mild for years and who progresses. It really varies. But lot of patient stories that includes what you doing, it really seems to make a life quality difference and I would think longevity too. There’s lot of research going on. My pulmo told me… Read more

This is a serious problem, but there IS hope. I am hoping these new drugs being researched can stop, and even revrse the scarring. Also, as a last resort for some patients, a donor lung can also be an option. My doc told me “there is research on this disease” I googled that and he is right.  Of course, some of us might not make it long enough… Read more

all very helpful, thank you!

After mild but definite (weird) SOB last summer, xray found mild PF last fall. HRCT confirmed this and was referred to my pulmo who ordered all the usual PF blood work and LFT. Tests were normal other than PFT showed slightly low dlco which he said he wanted to watch. I was scheduled for a follow-up at 6 months which is now. I assumed the… Read more

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… 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

Does SOB symptom always include lower Oxygen levels?  How does one know if O2 level is low besides using a Pulse Ox?

Also, how does one know if they might be having an exacerbation event? Is there such thing as a mild exacerbation (that still should be seen), or are they always pronounced (as in need the E.R.) ?

Right now it’s only… Read more

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… 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,… 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… Read more

“Health scientists in Leicester and Nottingham have discovered a gene which could lead to a cure for idiopathic pulmonary fibrosis.”

I learned in school 12 years ago that at that time the only gene therapy was to halt cystic fibrosis. That isnt a cure but a VERY effective treatment. Sounds like this one is also getting after the fibrotic… Read more

Hi all, I posted this yesterday but cannot find it, so trying again. I found this and among 3 new treatments in development it sounded the most promising. it worked well in phase 2, just look at the numbers…

https://www.boehringer-ingelheim.us/press-release/fda-grants-bi-1015550-breakthrough-therapy-designation-idiopathic-pulmonary-fibrosis

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… 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.

 

Thanks Mike,  happy for you.  🙂    Did you say Diet and exercise? This disease is more horrible than I thought!  just kidding!  It’s starting to become apparent to me that outcomes are VERY variable with this.  I can only hope my case doesn’t progress fast, that if/when it does, down the line, there’s a possible lung transplant option, and also… Read more

Interesting.  What is RIPF?  Would I benefit from knowing the list of meds that are triggers?

thanks guys very helpful… hoping for the least bad thing here but we’ll see. my chest does always feel “off” like as if I breathed smoke or something, which is new. the light cough doesnt bother me much. I’ve had bouts of more serious coughing that lasted months going back all my adult life and even in high school, but then it would go away… Read more

hi all, I have read a lot here very helpful!   this summer I noticed it was difficult to draw in a full breath. Not a real problem just “thats kinda weird” and chalked it up to being out of shape. Then in September I got a respiratory cold, saw my doc and mentioned the breath thing, and my doc sent me for a xray. They saw “interstitial… Read more