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Ofev and zinc
Has anyone taking Ofev supplemented their treatment with the zinc and related supplements? . And how has their pulmonologist reacted to this approach?
Thanks
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38 Replies
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I started taking Zinc but have not spoken with my Doc yet. I will inquire on a Zoom visit with him the first week of September.
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I’ve been taking OFEV for about 7 months. 2 weeks ago I suffered a stroke. Strokes are a side effect of this drug. Anyone else have this issue??
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I live in the UK and have been on OFEV for a little over two years and I was also interested in considering zinc as a supplement. My pulmonologist wouldn’t say whether this was a good idea or a bad idea so its probably a grey area at the moment – I’d be interested in reading any comments!
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I have resisted the OFEV so far, but do you feel that it is actually holding the increased scarring back at this point?
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I have two pulomonologists. One in VA and the other in Medicare. I told them both I was using 50 mg of zinc with <em class=”TNT2l AStapd”>Resveratrol and NAD+, also one aspirin per day and 6 mg of EGCG. I told them they were OTC stuff. They said to continue if I wanted, but they did not seem to know what I was talking about. In other words, they only know what the phamaceuticals tell them.
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Interesting…. I have become quite interested in Dr Noble’s group at Cedars Sinai recently and the use of Zinc and other off the shelf type supplements. I’m a bit curious as to whether a combination of “off the shelf supplements” possibly proving viable in reducing scarring would become an accepted combination to battle our situation or would someone create a way to make it legally viable only if made by a manufacturer (which would take FDA and other trials and scientific proofing). I’m certainly not against using supplements if there appears to be a crescendo of successes in this area.
Has anyone run into other information since Feb /23 on this subject or are you aware of any other of Dr Noble’s efforts in this area being published recently?
83′ and searching for answers (cures not band-aids)of which there appear to be only one or two at the moment
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Jose I agree that physicians are unsure about the zinc etc. my pulmonologist recommended recently that we hold off until we see how the Ofev does. Frustrating
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Hey Chris I have been on OFEV total of 300 mg daily for 2 years. 2 pills daily – each 12 hours apart. I have no idea if my PF and Emphysema have been helped. I was diagnosed 4 years ago and both conditions were mild. CT scan 3 years ago was about the same. I was able to walk around a 17 acre park most of the way before my oxygen dropped to 88. Now I hit 88 (or lower) just walking up the stairs in my home. Recent CT scan shows that my condition has worsened considerably. I cannot tell you if it helped. Cosidering the VERY serious nature of the disease I would say better safe than sorry! I am retired so I am able to live with the 3 or 4 trips to the bathroom starting around 11 a.m. to 2 p.m. daily. Immodium helps. Today I had an appointment at 3 (left at 2) and skipped my OFEV at noon to help avoid an unpleasant occurence. Typically I take one at noon and then midmight. Night owl…
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Hi Harold, dad is going to start Ofev in a few weeks via Oxford Churchill ILD team. He has been told 11-12 hours gap too between the doses, but also that must be during or after substantial meals to minimise the diarrhoea and nausea side effects, which recent trials have shown. So they have told him if he has breakfast at 9am, he must eat dinner between 8-9pm.
I noticed you take at noon and midnight, are you eating at these times, or given different advice?
Tx
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Re waiting 12 hours between doses of Ofev : I wanted to pass along the guidance given by my previous pulmonologist at the U of MN (she is head of dept, a researcher and professor so I really trust her analysis and advice). She said the 12 hour time span between doses of Ofev is not absolute at all. There is flexibility and I find my evening dose is usually about 10.5 or 11 hours after the morning dose. She said the most important thing is to take the Ofev during a meal or immediately after finishing…do not wait! Make sure your Dad has protein to carry him through and definitely some carbs to absorb the med. I often have a graham cracker or similar in between meals and before bed, a small glass of milk helps too. I haven’t found the need to eat the enormous meals that the Ofev reps recommend either. Just my normal meals with good common sense about nutrients. Hope this helps a little!
Best of luck!
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ty Libby. due to his platelets fluctuating (as he has Myeloma blood cancer too), they have decided on Esbriet now instead. hopefully it helps.
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I have severe ILD. I’ve been on Ofev for only 3 weeks and was told you don’t start seeing any results until 6-12 weeks. A pulmonary nurse told me I might have more energy on it, but I haven’t noticed any change yet. My side effects have been minimal and manageable. What’s the benefit of taking zinc?
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I’m taking all of the supplements per Dr nobels live zoom meeting with the pfwarrior group. My pulmonologist at the University of Minnesota is Aware and knows Paul Nobel.
it will be a year since starting the supplements in December I believe.
‘Paul Nobel is doing a follow up zoom with us in December of 2024 I believe . sign up at PFwarriors.com for free to attend.-
hi rick, could you advise the dosages you are taking of each, and how you got to those amounts? ty!
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I thought I posted this already and forgive me if this is redundant. 30-50 mg Zinc , 1000mg resveratrol,
1200Mg NAD+
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My husband takes OFEV and supplements with 22.5mg of zinc everyday, after I read the article on this forum last year. His zinc blood values were low and your body does not store zinc so a daily dose seems logical. His pulmonologist sees the medication and supplement list every 3 months and has not commented on the zinc. This is in Belgium. His RA caused lung-fibrosis is stable.
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The recommended doses on Dr Paul nobels warrior meeting
35-50mg of zinc, 1000mg of resveratrol, and 1200mg NAD plus , daily
he mentioned that it could take up to a year to have any effect.
again, we are meeting him this December (2024) , as a follow up on this subject. There will be many excited to hear what he has to say. The last zoom with him we had over 500 attendees.
Stay strong my people.
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Hi Rick, I also am a PF Warrior and watched the lecture and video from Dr. Paul Noble last year. I remember clearly (a rare occasion) that he suggested a dosage of 30-50mg of Zinc, but can’t find in my notes or when rewatching the video, the recommended dosage of True Niagen NAD+ or the Resveratrol. If your dosage numbers are correct I have been woefully underdosing. My NAD+ comes in 300mg capsules. So rather than my typical one tab I should be taking 5? And 4 of my 250mg Resveratrol? Yikes, that’s going to get pricey. Do you know if the dosages are based on patient weight?
Thanks, Laura
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Yes, Laura, he says 1200 Nad plus , 4X 300mg = 1200mg . I know it’s a lot of pills to swallow, but hey you can do it or not. I been doing it in two sessions. 12pm and 6pm. Peace my sister.
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do you take this in powder and where did you get it from. seems so many unreliable sources out there. ty
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<div>Do you mean December 2023</div><div>
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Thanks for this info. I’m newly diagnosed and just started Ofev. I also purchased the zinc plus other 2 OTC supplements. Does anyone know if you are suppose to split the daily dose of the NAD + and other supplement into two different times of day or take it all at once?
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Rick
Thanks so much for all of your helpful information. One section I’m not clear about is the aging stem cells lining air sacs loosing their ability to heal damaged tissue as they age and zinc needs a protein called Zinc transporter 8 (ZIP8) to draw zinc into cells to regenerate damaged cells. How can we be assured we have adequate ZIP8 or can produce it?
Rick sorry to bother you with so many questions but truly appreciate (and need) your guidance. Sincerely, El
Would it be possible for some of us to attend the ZOOM Warrior Meeting in December? It sounds like a fantastic meeting.
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Anyone who signs up @ PFwarriors.com ( free), will be able to attend zoom meetings.
😘
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I tried taking zinc while on Ofev and the nausea was terrible. The pharmacist said that zinc can exacerbate nausea with Ofev. I wouldn’t recommend it, but that was my experience with zinc
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Zinc may cause nausea on empty stomach
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I started taking Esbriet about three years ago. No noticeable side effects. 801 mg three times a day. It seems to be slowing any progression of my IPF. I have just this week started a regimen of Zinc. Nads , and Sirtuin. My thoughts is. What have I got to lose by trying it. I’ll post anything useful from this new approach.
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I take zinc bc of a study I read a while back. I can’t find the study but I’ll keep looking. I will try whatever will not do harm. I also talked with the specialty pharmacist about the ofev. I was told the reason for dosing every 12 hours is to maintain a certain level of it in your system for it to work effectively. I take mine at 9am and 9pm with a snack. They also told me I can take Imodium as needed as directed. I try to balance my intestinal issues with foods. I have been on ofev for four years and I have noticed the longer I’m on it the less intestinal issues I have. I wish you all the best!
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<div>As a biochemist myself….and with IPF in my family I read Dr Nobles findings about Zinc , NAD+ ans Sirutinin activators with interest.</div><div>
One question for the group…I notice this news was announced over a year ago in 2022.
We are nearing the end of 2023…but I see no other discussions or news about this approach
Is there anything new in thus area?
It seems since these are over the counter supplements in specific combination and not experimental new medicines it should be easy to quickly set up a proper human trial.
Anything new going on with this?
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I have two pulmonologists. One with the Veterans admin and the other with medicare. I always tell them what I am taking over the counter such as Zinc with resveratrol, NAD+; also taking one aspiring daily; taking EGCG . They tell me that is no problem but they do not fill in on these things. Perhaps is not science for them. I was diagnosed at end state two years ago and since then, with the Ofev and my over the counter along with excercise and I have no changes on my CT scans for the past two years. Perhaps because as one of my pulomonologist says, my lugs are so covered with the fibrosis that there is no place for more. lol. I was at one of them two days ago and she said I sound much better since last year. Both at the VA and Medicare are telling me to try for a transplant. I am 77 years old but very athletic all my life. I am afraid of the transplant, but my pulomonologists is making all the tests pre transplant just in case I change my mind.
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I too am curious if, well after a year, any human testing has taken place. Or any new findings. I believe I read in a forum that Dr. Noble may be addressing the PF Warriors near the end of this year but I don’t see a confirmation of that on their meeting calendar.
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I received confirmation from one of the leaders that Paul Nobel is scheduled in December again. . Get signed up at PFwarriors.com, they will send you notices before the meetings. I don’t think they post the speakers months out in advance.
Stay strong my people. ✌️♥️
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It seems strange to me that there is no real discussion or new details on the zinc, nad+, sero activators finding after one full year
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It’s not an actual study. It’s more of an experiment in my mind. You have to have funds to do a clinical trial. 🤷♂️
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<div>True</div><div>
Perhaps I should reword my comment
Last year Dr Noble and team seemed very excited by the lab findings of how Zinc , NAD+ , siri activators halted or reversed fibrosis in altered mice and isolated human lungs in vitro.
They expressed an interest to do more lab tests and set uo human trials
What surprises me is there have not been any more news or comments related to these zinc findings
And despite the fact that there is no unknown medicine at play here….the compounds are already available to the public…so setting up a clinical trial should be pretty easy
So I wonder why everything has been so quiet for over a year now when all involved seemed Gung ho and excited by their early discovery
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I noticed this discussion is a couple months old but just seeing it. My pulmonologist said he didn’t see any reason why I shouldn’t take zinc . In a discussion with the nurse practitioner representing Boehringer Ingelheim, the manufacturer of Ofev , told me the company is studying zinc as an antifibrotic. Hopefully their will be news on the effectiveness of zinc on IPF in the near future.
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Since the Cedars info last Feb I have added 50mg zinc piccolate to my daily dose along with OFEV. Also since Feb22 I have stopped burning gas to cook- got an induction stove. Since then I am sleeping much better. My last CT scan shows no increase in scarring. Is it because of OFEV, zinc, not breathing partially burned CH4, or a combination of the above? The MDs don’t know either – that’s why it’s IDEOPATHIC.
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<div>Keep in mind zinc alone was not used</div><div>
The zinc needed NAD+ and sirutinin activators to be effective
So I know people have been using zinc picolinate with nicotinic ribosome and resvertrol in combination
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