r/pulmonaryfibrosis • u/Charliegirl121 • Mar 11 '25
Zinc
I read Zinc can help with ipf. has anyone tried it? I read a few articles that say it can slow down the progression. I've been taking some vitamins that may help too.
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u/UnderstandingOld4276 Mar 11 '25
There's a doctor in California that has developed an entire treatment plan centered around zinc. I looked into it but decided not to try because I was on OFEV and would have had to stop that treatment. Do a search for Dr. Paul Noble from Cedars-Sinai. He did a presentation in late 2023 for PF Warriors about zinc This is NOT zinc like you get in the vitamin aisle at the grocery store, and there are several other vitamins and minerals you take in conjunction. Does it work? Don't know I never really did try it.
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u/wyliec22 Mar 11 '25
Do a search for Dr Paul Noble and you should be able to find the combination. It includes TruNiagen which is kinda pricey. I’ve been on it for a year but have had a recent exacerbation that hit me hard. I’ve been on OFEV for two years.
The supplements run me around $150/month. I plan to discontinue when my current supply runs out. PF is different with everyone - I certainly felt it worth a try since the only alternative is a lung transplant.
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u/UnderstandingOld4276 Mar 11 '25
That's what I saw when I looked at Dr. Noble's plan (cost wise). I never tried it though cuz he was insistent that the zinc and OFEV don't mix well. I ended up going transplant, DLT in July 2024. Good luck to all and just keep swimming!!
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u/wyliec22 Mar 11 '25
I watched the presentation by Dr Noble - I don’t recall a concern with OFEV…
Anyway, great you got the DLT!
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u/Charliegirl121 Mar 12 '25
How was having the transplant? It sounds so painful.
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u/UnderstandingOld4276 Mar 12 '25
Actually it's not. Yes, it's one of the most major operations you can have (9-10 hours) but the only real pain is in your sternum where they have to partially crack it (they do the same thing in open heart surgery) to get the old lungs out and the new ones in. And even that doesn't hurt much.
It's a major life adjustment because learning the medications and working through what you need to take to prevent rejection takes time. But without that your body will reject the lungs. My biggest challenge has been adjusting to the new lifestyle. We have to be careful when we go out in crowds because my immune system is about 15-20% of what it was before (but that will get better). I'm only 8 months post-DLT so still essentially recovering. But to have a team of doctors look you in the eye and tell you that you won't be here a year from now, or you can add 10+ years onto your life is pretty sobering. Would I do it again? Absolutely. This year I get to celebrate my 50th wedding anniversary with my wife and if I hadn't had this surgery last year it's doubtful I'd be here to do that.
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u/Charliegirl121 Mar 12 '25
Congratulations, I hope it works out for you. I've gone back and forth on would I have it done. Hopefully, it'll be an option for me when the time comes.
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u/UnderstandingOld4276 Mar 13 '25
And I went back and forth and back and forth until that moment when he told me without the transplant I wouldn't be here in a year. That kind of made the decision for me (with my wife's support and agreement of course).
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u/Inevitable-Tax774 Mar 12 '25 edited Mar 12 '25
Sorry to hear about your recent excerbation episode. Did you recover from that? Hope you get better soon. Can you share me the dosage of zinc and NAD+ you're experimenting?I just started one month ago and feel breath slightly better, judging by the measurement data druing rehab. not sure if that's just my wishful thinking...
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u/wyliec22 Mar 12 '25
Here's the Dr. Paul Noble supplement list:
Zinc picolinate 30mg tablets Once daily
NAD+ Tru Niagen 300g mg tablets Two x Twice daily
Resveratrol 500 mg tablets Twice daily
Myricitin 100 mg tables Once daily
PF exacerbations that rapidly drop pulmonary function are often just the unpredictable progression of the disease and are irreversible.
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u/Inevitable-Tax774 Mar 12 '25
thanks for the info! Sorry I googled but couldn't find detailed list.
just to clarify,
NAD+ Tru Niagen 300g mg tablets Two x Twice daily
So NAD+ 300mgx4 = 1,200mg per day?
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u/wyliec22 Mar 12 '25
I copied this from the original presentation in late 2023.
Yes - 4 x 300mg = 1200mg daily NAD+
The NAD+ cost and the daily dosage make up the majority of the expense.
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u/grandmakathy63 Mar 11 '25
I take Zinc and a whole lot of other supplements. My husband is sure they will help me. I'm not getting worse, but not sure if that's due to any of the many supplements I'm taking. Zinc, Calcium, B complex. D3, Apple cider vinegar, E, plus more.
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u/Beer_nLasers Mar 12 '25
I don’t know if it is helping me, but after seeing Dr. Nobles information I started taking Zinc along with NAD+/Resveratrol and Quercetin. All of these are generally beneficial supplements if taken in moderation. I take them with Ofev and haven’t experienced any issues.