He Sam – thanks. VA reminds me of vacs when needed. Stay well – Steve

Hi Charlene – I took the RSV a couple of weeks ago after moving cross-country, and it slowed me down with aches and pains for several days. But I was already tired, and at almost 77, I’m glad I did it. So I get the flu shot yearly with no problem other than a little soreness. Pnuemonia is a one time shot (I think) with no issues, had…

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Mike – how much Tru Niagen are you taking?

Staying active is truly the key. When we moved from the Philippines Nov 30, 2023, I had no O2 on the plane. Originally diagnosed Oct 2017 then age 67. Exercise is the absolute key no matter how much longer it may take. 6 months or so before we flew stateside, I started walking the stairs in our house and got up to 60 or 65 reps 6 days a…

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I’ve been on Jascayd for a couple of months with few side effects, BUT I had leftover Ofev and using it in the AM; Jascayd PM. Will be starting Tyvaso in a few days.

Stay well…
Steve

Thank you for your responses – we are all on a one-way journey, it’s what we do until that day that matters…

stay well,
Steve

I am sad. We have lost this amazing man. George Metezsky has passed away. I don’t have the details. I will post when I have more information. I know it was sometime between the 20th and 22nd. I am devastated and I know so many others will be.

Here is something he wrote years ago. May it help and bless you, too…

I was a counselor for 30…

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Started Jascayd almost 2 months ago and can report that after the first few days of minor issues, I have no determinable side effects. But I am taking a half dose until I finish my half dose of Ofev…

Stay well
Steve

Fortunately, VA covers it of I think my cost would $2100 monthly…

Stay well…
Steve

As a 76-year-old male, I have been taking 50 mg zinc daily for several years with no issues, regards the NR I am unsure but ill start it next week. It is a good idea to vet again any supplements you take every 6 months or so as new data pops up all the time…

Thanks so much…

Do you have a link to the study? I have been taking NAD+ for a few years, along with resveratrol and zinc, separately. Knowing the doses the doctor is testing would be a benefit. thanks – steve

I have seen DMSO contraindications for IPF. Also how would it be administered? Stay well, Steve

Been on NAD+ and Sirtuin 9, 2 years+ (it is a little superior to sir 1). Also alpha lopic acid – with caution – it can make my heart skip a beat sometimes. These 3 have helped me significantly, meaning everyone is different, and I am 76 and 9+ years with IPH, also PAH, and now heart failure on both sides.

Also take NAC, Querctin, among…

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Life expectancy is the big one but I have seen various levels of care that are disappointing. Some “pulmonary” PTs are really focused and others do what they need to get by.

Some areas of white papers could be followed up on better – including discoveries in our RNA/DNA that might promote actual healing, not just maintaining – but they take…

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@jai – Thanks for the insight. Caused me to reach out to my Pulm Doc for accurate info on PAH, DLCO and FVC.

Stay well…
Steve

Charlene – those are harsh realities. Since I don’t qualify for a transplant, I often look at various supplements that might complement the lung prescriptions I’m currently taking, and I keep finding new things to research and determine if they are worth trying. Have started several and stopped a few because they didn’t help or seemed to make…

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Living almost 9 years with IPF and long before that, I knew life on earth can end abruptly at times, but can drag out in suffering, too. Because I decided to see if there really is one True God, I investigated the Bible, starting 23+ years ago, to observe what it has to offer for life. I have not been disappointed, but there are far too…

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@Charlene Marshall – that’s a very good find. Thanks for sharing…

I have used serrapeptase for 7+ years and it still takes care of most of that problem. It does get worse as we progress through IPF/PF. There are some cautions – it can never be taken around any other pills and avoid food for at least an hour. Let me know if you want some more information…

Stay well…
Steve

With something this easy to grow in SE Asia, you would think you can buy it somewhere…

Coming up on 9 years in October, I can understand how some might feel that way, Charlene. It is sad and can even be discouraging when someone we know suffering through any form of PF has gone to their rest. Many times, I see survivors post that they are thankful for our support and glad their loved one is no longer suffering. To many,…

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Only a class IV laser works. Dr Andrew Hall has the protocol on his website. He is a chiropractor in Sonora CA. Hope it helps…

Steve

Been using it for mucous 7 years. Caution do not take with any other pills for at least 2 hours, as it will dissolve them fast, also no food for a couple of hours. I take 720,000 SU (6 pills) before bed and buy it on AZ – delayed release. It has been used for liver scar tissue for decades and may – emphasis – help in the lungs.

Stay well…
Steve

8 years ago, I started having serious mucus problems and did some research about Serrapeptase, it was initially used to reduce scar tissue in the liver for a long time. Tried it then still use it now BUT a very serious warning it is measured in SU and I take about 500000 su in the evening before sleep (4 pills) – the warning is NEVER take…

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Sorry for your loss Samuel… Steve

When I cough, sometimes people give a harsh stare because they are afraid (post-COVID?). To avoid the blank stare after a conversation of IPF, etc, I just say, “allergies – gotta love ’em,” and move on…

Your O2 provider may have a mask you can use instead of a cannula to help you while walking. All my life, my nose could randomly plug some, so the small mask with a hole in it helps when I need O2 and my nose says nope.

Stay well…

Steve

Wll do. I was offered a slot in phase 2 of the Boheinger but out of the country at the time so missed it…

Thanks a lot Alex. Good insights. I’ve been on this platform (PF News) since mid-2018…

They have been very slow in completing registration last July, Andy…

I flew back from the Philippines 16 months ago which took almost 2 days and had no O2. Currently on 2L during any activity but 16 months ago only needed O2 at night.

Hi – there are a couple that offer genuine continuous flow but hard to find…

I take a substantial number of supplements, including those 2. Not knowing your situation, many can benefit from D3, K2, and a good B-complex.

I was in the Philippines for several years, and they know nothing about IPF and its siblings. So, being on my own, I discovered several things that work for me. At almost 76 and 8.5 years into…

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What were your results in the trial and post? Thanks…

I’ve been looking for a reasonably priced continuous flow POC up to 4L. Any insights? Thanks…

I don’t see this as a political post, it is currently a fact of life and may eventually affect us more or less.

Stay well…
Steve

There is a vast amount of waste and corruption in our top-heavy government which will cause far more serious future consequences if not dealt with. However, at least initially, legitimate research will not feel much of an impact.

I had to survive on my own for several years in the Philippines where there was little help for ILD/IPF/PF -…

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Hi Tempo – AE can be substantially different per individual and per incident. Had at least 2. The 1st was almost devastating. Initially I could not not sit up in bed. Didn’t eat for almost 6 weeks but I don’t recommend it as a weight loss program. It took almost 10 months before I could help again around the house and I have never…

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Regards Dextromethorphan – it is is some cough syrup OTC and I use it almost daily for 2+ years but have zero insight for stopping/slowing (I)PF. A quick AI search indicates it may help buttttt – it is AI saying that..

Interested in the German study…

Stay well,

Steve

I have looked at it and may get a small unit later on but it can be a little dangerous if not used specifically. I would ask about it with a few doctors, maybe even AI.

Stay well,

Steve

I have a friend married for 57 years and his wife is quite ill with COPD, covid and covid pneumonia. I cannot imagine your loss but you have some fantastic memories to look back on. Nothing will fill the loneliness but One thing I have found – a daily Spiritual walk, about the only thing of hope and consistency in this world…

Steve

Hey Rod – the doctor started me on it a few months ago and at times it makes a subtle difference, that works for me as this progressive disease needs more intervention as it elongates the time frame (8+ years).

Not suggesting this will work but I take a significant number of supplements that I try to fine-tune regularly. Pulmonary PT showed…

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clinicaltrials.gov lists all of them for the USA and some worldwide. Good luck to you…

I wish they would tell me no scar tissue after 8 years with this lovely disease.

Stay well…

@Curt Strickland – would like more info too about the stem cell treatments. Thanks – Steve

It is good news that multiple trials in 2 or 3 are favorably advancing. I missed a couple of opportunities but Ofev seems to help a little for now + a bunch of supplements…

Stay well…

Steve

I assume you are in the USA and did that with a prescription? I am 8 years in and holding my own but the cough is increasing. Only been using OTC Robitussin DM which helps – slightly…

Stay well…

Steve

Hey George – that’s great what you are doing. Is the Inogen % pulse or continuous flow for you?

Steve

I tried Ofev but almost immediately had diarrhea that was uncontrollable and stopped but I want to try it again lower dose so I can slow this disease some.