anonymous
Forum Replies Created
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going by this, the survival looks a little better at other centers
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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?
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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?
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new (better) drugs are coming, a lot of research is ongoing. 🙂
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all very helpful, thank you!
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thanks to everyone for the replies it really helps.
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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
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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 [2] indicated that the median survival time in IPF was 3.8 years, with survival time decreasing sharply based on age at diagnosis. Patients between 66 and 69 years had a median survival of 8 years, compared with 4.5 years in those diagnosed between 75 and 79 years, and 2.5 years in those diagnosed at ≥80 years.
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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 biopsy them?” I have a great pulmo, but before anything major I’d find another great pulmo and run it by them as a second.
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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
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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 cystic fibrosis. They said it was a missing gene in lung tissue, and there was an inhaler with RNA that the patient used biweekly, and it mostly stopped the progression. This is mostly from memory as I recall. When I read this, I was thinking they MIGHT be on to something but didnt notice the 2017 date.
So, I’m more excited about the new drug now in phase 3 trials, see my other post on that.
In any case, there is NO doubt that researchers are closing in on this. Just not sure the timeframe. In fact my Pulmo told me this is a disease under research.
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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.
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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 funny? Or only when it is active?
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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 the SOB, diaphragm felt ‘tite’, came out of nowhere and I didnt think much of it “out of shape, or maybe a little fat”, until my GP sent me for xray and PF was seen on that, then confirmed on CT, and PFT was showing slightly low DLCO. All blood work for the known causes that can be shown that way were negative. But I would jump for joy if this were “not a bad PF”. Seems like the only way to know is to wait. 🙁
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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. Also, there’s lot of research going on into PF. My pulmo told me that and he was right. So, for me being a very mild stage, hoping for even one of these new treatments to work well and come onto the market. If not, there’s transplant if it gets to that point. Those are good reasons to make good choices like what you doing and in my case I protect my lungs with N95 masks when around ANY dust etc, hepa filters running in the house, and am taking lung health supplements (which may or may not help, but more likely to help than not I think).
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This is a serious problem, but there IS hope. I am hoping these new drugs being researched can stop, and even reverse the scarring (that has been achieved in mice, so it is apparently biologically possible). Also, as a last resort for some patients, a donor lung can also be an option.
My doc told me “there is research on fibrosis” I googled that and he is right. Of course, some of us might not make it long enough to benefit from that research, as we could get hit by a bus, fall off our bike and get a head injury, have a heart attack, get abducted by a UFO, or anything else! Personally, I am going to try to avoid those other issues and keep faith that this substantial ongoing research will yield very good treatments. I counted something like 20 drugs being studied! One anti-fibrotic (BI1015550) worked so well in Phase 2 trials (almost completely halted progression in most participants and was well tolerated) that the FDA gave it “breakthrough designation” and Phase 3 trial ends at the end of next year. I dont know what the timeline is after that even IF it works as well in Ph3, to when it hits the market, but that, and all the other research and drugs being tested is certainly a reason for hope that the status quo can only get better.
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hi kim, what haritaki dose do you take? I got 750mg and take one a day.
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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.
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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 and PFT next month I’m kinda dreading, but really need the data.
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Kim, can u send a link to that? I cant find it through google. Thank You!
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Thank you for your service Mike to our country. I had 3 veterans in our family, one WW2 medic Italy/Germany, one cold war (atomic vet!) and one Coast Guard. It’s a big regret I didnt sign up myself and I look up to everyone who has served.
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Some patients dont have side effects from one or both of those. Have to try first.
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Hi Denise, how did your treatment plan change with the diagnosis from the biopsy? I didnt 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.
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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.