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    • #32364
      Photo credit 

      I appreciate the members of this forum for a magnitude of reasons. One is being able to connect with everyone about what its truly like to live with this terrible lung condition, and another is because members are so willing to share their findings on things like: clinical trials, supplements to help manage symptoms and research that is being conducted for idiopathic pulmonary fibrosis (IPF).

      Recently, a member shared an article on Zinc and how it’s been found to play an important role in lung fibrosis. I wanted to share it as a post so those of you who might not have come across it yet can read it. Described as a common mineral in this article, it’s encouraging to hear that zinc may reverse lung damage and improve survival with IPF, according to investigators at Cedars-Sinai.

      Have you ever discussed the use of Zinc with your doctor regarding IPF? 

      Do you currently take Zinc supplements, and if so, are you noticing any difference in how you’re feeling? 

      This is a lead I’m curious to follow and hope more information is released regarding this!

    • #32377
      Christie Patient
      Moderator

      Fascinating! I know zinc is good for your immune system but this is the first I have heard of it in relation to lung health, fibrosis, etc. Definitely going to keep an eye on this as I am interested in the relationship of auto-immune coniditions and IPF.

      • #32407

        I agree @christie-patient… this article was super interesting to read, not something I’d heard of before, even though I knew of many of the other benefits.
        Char.

      • #32547
        J L LaBrack
        Participant

        This is great information.  I wasn’t able to locate a local source for the form I wanted but ordered online and have started taking it!  After a bit of research, it appears that not all zinc forms are equal.  Zinc picolinate is the form that is reported to be the most completely metabolized.  Hence, I’m taking one 15 mg. capsule daily.  Too soon to detect any effects but will keep hoping.  It’s also important to note that overdosing can have negative effects.  For those who participate in the Inspire website, don’t bother to even suggest trying this!  There is a self-appointed “expert” (web name “idiothe”) who wrote a lengthy diatribe attacking me for even suggesting any possible treatment other than Ofev or Esbriet and was labeled a “huckster” for bring it up.  Really sad when the mission is to communicate experiences and share information and to support one another with this horrible affliction. I’m 78 and on my 5th year since diagnosis with IPF.  No supplemental oxygen yet, but my body is sending me signals that it won’t be much longer…  Thank you so much for passing this along!

      • #32577
        Sharon
        Participant

        After reading about zinc & PF, I asked my acupuncturist about it.  He did some research & recommended Natura 25 mg Food-Grown zinc, plus TRU Niagin Pro 500, which supports mitochondrial health.  He has Master degrees in acupuncture & Chinese herbal medicine, but does not disparage Western medicine.

        I had started to go to him for back pain & fatigue.  He has helped with both.  My shortness of breath upon exertion has also improved since I told him about PF, but that could also be due to  the pulmonologist prescribed Symbicort 80/4.5 with an extruder.  I have noticed that I sleep better, although I was never diagnosed with sleep apnea.

        I was diagnosed with mild stable IPF in the last 6 mos.  I won’t know if any of this has helped until I am tested again.  The problem was first spotted when I had a Medicare CT scan because I had been a heavy smoker.  A follow-up CT scan indicated possible PF.  A high resolution scan confirmed it.  I’m not eager to subject my body to more radiation, so it may be a year or so before I can report any test results.

         

        • #33026
          J L LaBrack
          Participant

          Not long after I posted this, I increased my intake to 2 capsules of zinc picolinate per day–one right after breakfast and the other right after dinner.  My resting sat. rate remains at 95-96%, but a flight of stairs drops it down to @88% if I rush.  This is pretty much where I was before starting the zinc, but I just ordered another 180 capsules (90 days’ worth) with a lot of hope!

      • #32611
        Jane Mason
        Participant

        I’m new to this forum but I’ve been reading the articles for almost a year  now. Lots of good info.  I was diagnosed with IPF in March 2020 altho I had it in 2016 but was missed by a doctor who I no longer see.  When my blood oxygen dropped to 88 I was put on 2 liters O2.  Also use continuous O2 on CPAP.  Began OFEV 200 mg 3 X a day I’m March 2020.  Numbers kept dropping.  Wasn’t working. So I switched to OFEV 150mg. My lung function tests leveled out and it seemed to be working. To slow the progression.  However. The side effects were to a point where nothing would stop the digestive problem.  So, my Dr. switched me to Esbriet in April this year .  I take 3 caps of 267 mg. each 3 X daily.  I get instant heart burn with every dose. But no digestive issues at all. Had a really bad rash at first that continued for a couple weeks maybe 3 but seems to have subsided.  So far, no other problems.  The real teller will be when I have my next lung function test which is scheduled for Dec this year. I take 50mg Zinc daily but I’m not sure it’s helping. My doctor says definitely try it cause it couldn’t hurt.  I struggle at times with the finality of my situation but I do my best to keep busy. I write in my journal or try to at least once a day. Not too many are comfortable with dying so I try to stay upbeat for their sake. It’s tough tho.

        • #32644

          Hi Jane,

          Thanks for contributing your thoughts and experiences to this thread; lots of information shared here about Zinc. I’m glad to hear your doctor encouraged you to try it, as their seems to be mixed physician thoughts on its use. Also glad to hear you’re tolerating Esbriet – I know the gastrointestinal issues can be really bad from Ofev. Take good care and keep in touch. Glad you’ve been reading the posts and hope they are helpful for you!
          Char.

    • #32379
      john styles
      Participant

      Time to dust off my bottle of zinc. good article.

      • #32395
        Allan Byron
        Participant

        i will try to use the supplement, if it help it’s great. At this juncture bee are open to new therapies. What do we have to loss?

        Allan Byron

    • #32380
      Doug
      Participant

      Link to the article?

    • #32382
      Jeff Taylor-Jackson
      Participant

      I am going to take it straight away.

      I can also use it to stop my garden gate from rusting! 🙂

      Really interesting article and seriously; we need some good or encouraging news.

      Jeff in England.

    • #32387
      Tim Costar
      Participant

      Given the reputation of Cedars Sinai, authors of the report, I started taking zinc the moment I read the article a couple of weeks ago. My thinking was, it couldn’t do any harm so why not!

    • #32389
      Charles
      Participant

      ZINC huh! Very interesting. Has anyone talked to a doctor about it? I, like Tim, will start immediately. Does anyone know how much is too much as far as dosage is concerned? Charles “Chuck”

      • #32492

        I am also curious about this Charles, and would love to hear from anyone who has spoken with their physician about zinc.
        Char.

    • #32390
      John K. Grubb
      Participant

      Very interesting.  This article offers some hope if one takes zinc.  So I will go and get some zinc this afternoon.

      Another one to follow is the antibiotic Ambatrol (this is the trade name, not the generic).  Some researchers have found in mice taking the generic of Ambatrol results in a reversal of IPF.  This is an antibiotic  that is used to treat diarrhea and I think next time I see the doctor I will ask for a prescription.  It almost certainly would not hurt me and may help

      • #32451
        Phil Ryan
        Participant

        I sent a message asking about it to my pulmonary physician severaladays ago and have yet to hear back from her? Frustrating…

      • #32456
        Debra Lowder
        Participant

        When I had COVID last fall, my pulmonary doctor told me to take zinc. I didn’t know why, but I started taking it and I haven’t stopped. I’m holding my own and feel pretty good for this being my third year living with IPF. Not sure if it’s due to zinc, but it sure hasn’t hurt any.  Debra Lowder

        • #32459
          Millie
          Participant

          How many mg are you taking?

        • #32487
          Christie Patient
          Moderator

          Hi Debra, your doctor recommended zinc when you had COVID because it is known to help the immune system and shorten the length of cold symptoms. It’s generally accepted with the likes of Vitamin C as a supplement for cold and flu season. Considering COVID comes from a coronavirus and has similar symptoms to other respiratory illnesses (and because COVID-specific treatments are seriously lacking), your doctor did the right thing by advising it when you were sick. And from the research regarding zinc and IPF shared in this forum, seems like a good move that you have stayed on it for the last year too 🙂

    • #32393
      Millie
      Participant

      I have been taking 30mg of zinc on a daily basis. I have no idea if that dose is too high or too low. I recall reading somewhere that too much zinc can cause other problems and the 30mg was recommended. Does anyone know what the proper safe dose is? The article doesn’t mention that.

      • #32462
        Debra Lowder
        Participant

        50 MG. Per day.

        • #32555
          Pauline Korol
          Participant

          Debra, I have also have started taking zinc.  I’m currently taking 50mg a day and hoping that in the long run, it will help.  At this stage, I fear I have nothing to lose except hope.

        • #32558
          J L LaBrack
          Participant

          Pauline–

          Please double check your daily dosage.  50 mg./day has been widely stated as too much, especially for a woman.  Under 30 mg. should be max from what I’ve read.

        • #33022
          Pauline Korol
          Participant

          Thanks.  I will check it out. This is the only strength they had on the shelf at Supertore Pharmacy.

    • #32396
      Judy Fraser
      Participant

      I have been taking 30 mg of zinc for about a year. A doctor (not my lung doctor) advised me to take it to help my immune system So it’s on my list of medications that my lung doc sees, but he’s never commented on it.

      No idea if there’s any connection, but my recent CT scan showed no change from a year ago, which I regard as good news.

      BTW I was diagnosed in early 2019 and am not taking any anti-fibrotics.

      Judy

      • This reply was modified 5 months, 2 weeks ago by Judy Fraser.
    • #32398
      Fay
      Participant

      Interesting! In March 2021 I had an exacerbation of PF and time in hospital. With Covid still around I decided on some supplements to build up my immune system. One of these was powdered Zinc 40mg with Vit C – directions were up to 3 months and label warnings for long term use so I hadn’t taken it over our Australian summer.

      My last 2 lung function tests in March and June 2022 were stable with an increase of lung volume. I had also been doing some lung volume breathing.

      Nothing scientific here but perhaps time to do another dose as it is the Australian winter. I am a PF survivor (so far) diagnosed in 2015.

       

    • #32401
      gil
      Participant

      Thank you for the informative article,  I will add a zinc supplement.

      Does anyone know if it is better to take it in liquid or pill form?

      • #32402
        Kevin collier
        Participant

        It is best to take your zinc with 4-5ounces of Tonic water the quinine in the tonic water helps the cells absorb the “large”zinc molecules.

      • #32429
        Raymond Petit
        Participant

        I never took a liquid form only a daily tablet

      • #32608
        J L LaBrack
        Participant

        gill–

        From what I’ve read, not all forms of zinc are equal.  Capsule seems to be preferred over liquid and the form most completely metabolized is zinc picolinate.  The optimal dosage seems to 30 mg./day for men and somewhat less for women. Also overdosing should be avoided according to most sites, as it has negative effects.  I’m getting the impression that many (if not most) pulmonologists concentrate on COPD, emphysema, asthma, cancer, etc. and really don’t know a lot about pulmonary fibrosis.  In broad terms, every medical school in the world has someone every year who graduates last; and somewhere out there is a medical school which is rated last…  Bottom line, we’ve really got to be our own advocates.

    • #32403
      Steve Dragoo
      Participant

      I started taking it again after this article butttt –

      Zinc is great when used properly not so when it is not.  For example, don’t use a nasal spray and definitely pay attention to the maximum dosage of less than 40 mg daily for men; less for women.  There are certain contraindications with other drugs too so please do your research.   I hope zinc helps and adding it again to the arsenal of supplements: serrapeptase, nattokinase, D3 and K2, alpha-lipoic acid, metformin, NAC B-complex berberine Omeprozoale, etc…

      Stay well…
      Steve

      • #32414
        Judy Fraser
        Participant

        Steve,

        Could you provide references/links for this info? I can’t find it.

        Thanks,

        Judy

        • #32416
          Steve Dragoo
          Participant

          Which info, Judy?

        • #32417
          Judy Fraser
          Participant

          Nasal spray, contraindications with other drugs, max dosages.

        • #32419
          Steve Dragoo
          Participant

          Look up zinc side effects and contraindications also search for side effects on zinc nasal spray. Good luck

      • #32430
        Raymond Petit
        Participant

        I’ve been taken 50 MG daily for several years no side effects so far

      • #32486
        Christie Patient
        Moderator

        Definitely an important reminder to do our homework. Thanks Steve. You are always a good source for supplement information and it’s clear you do your reading before experimenting with OTC options. Thanks for sharing these points and helping others to think critically about supplements 🙂

    • #32388
      Raymond Petit
      Participant

      Yes I believe in Zinc I’ve had IPF for over 10 years I’m 85 now my pulmonary doctor took me off Ofev Three years ago and every year my X-ray shows no more fibrosis growing no Oxygen my Ox level is 94 up to 98 I’m a big believer in Zinc

      • #32425
        Steve Dragoo
        Participant

        Hi Richard,

        What dosage are you taking daily?

        Thanks…
        Steve

      • #33028
        J L LaBrack
        Participant

        Raymond,

        Your story is a real inspiration!  I’m a 79-year-old male and got my bad news in May 2018, so now in my 5th year.  Started taking zinc a couple months ago (15 mg. in a.m. and again in p.m.) with no decline so far.  I’ve refused Esbriet and Ofev because of huge $ and awful side effects.  The fact that you were taken off Ofev 3 years ago is a strong suggestion that zinc may have made the difference.  Does your pulmonologist agree that that may be the case?  Mine is clueless…

        /J

    • #32410

      Thank you all for sharing your personal experience with Zinc, along with your opinions on the article… I found it very interesting as well! Similar to Chuck, I’m curious if anyone has brought this up with their doctor and obtained any feedback? It’s a credible article from a reputable site so hopefully a physician out there will read/listen to it. If you get any feedback from your doctor, please let us know.
      Take care,
      Char.

    • #32415
      Jeff Taylor-Jackson
      Participant

      Hi Charlene,

      I regularly bring articles of interesting research up with both my consultants, and with the Clinical team at the APF Charity (UK).

      Generally the response is “dont believe everything you read on the internet”.

      I get that, but I also get frustrated at the lack of interest in another line of research, if they are not following  that particular path. If I ask about the research they are doing, I get very enthusiastic responses.

      So I guess what I am sying is if they are interested in Zinc, it will go further, if not you are blown off.

      That said, I will definitely be bringing this up. I also went down to the chemists today and bought two bottles of Zinc and I have taken the first pill straight away.

      Why not?

      Regards

      Jeff

    • #32421
      Kitty
      Participant

      Hello Everyone,

      The recommended daily intake for zinc is 8 mg for women and 11 mg for men. The “tolerable upper limit” is 40 mg daily. These are provided by the Institute of Medicine for many nutrients. The recommended daily intakes are the levels needed to avoid overt disease while the upper limit is sometimes an educated guess .  Higher quantities are known to cause harm. For excellent and reliable information about nutrients you can go to the Linus Pauling Micronutrient Institute at Oregon State University. If I weren’t technically challenged I would provide the link but…..! Hoping this is useful.

      • #32424
        Steve Dragoo
        Participant

        Thanks Kitty – I saw the same info but add that that dosage is for generally healthy people. As a 73 year old male with other compromising factors, I am taking 40 mg daily but about an hour after other supplements.

        Stay well…
        Steve

      • #32428
        Millie
        Participant

        I’ve been looking at zinc/copper supplements.  What I’ve seen is 30mg of zinc combined with 2mg of copper and 50mg of zinc combined with 2mg of copper.   They say that zinc depletes copper so the combo is better.  Then I read somewhere that you are not supposed to take the two supplements together.  I’m confused.   Can someone straighten me out on this?

    • #32431
      Charles
      Participant

      Millie, you think that you are confused, read all of the above articles and you will find no two are alike. However, as Kitty has said, my GP doctor has also said that 11 mg is about correct for us men because of the possible side effects. So i not only questioned her, i also told her that most everyone on this site is taking 30/40 mg per day. So i asked her if the side effects are major or just something like an itch, calcium deposits or an ingrown toe nail. When she got back to me, she did say that there WERE NOT major problems. So she said to try the 30/40 mg and see if anything new starts growing on me. 🙂 So this morning i went to the local pharmacy and all they had was 50 mg. (I live in a very small town) So i bought them and took my first tablet this morning. The way i figure it was, that the worse thing that could happen is that i die. So what’s new!!! I am on my 9th year with this thing and have been taking OFEV for the last four years and now needing oxygen a lot more that a year ago. I am getting worse, but it is slower than the general articles say when i should croak. So that’s good, i think! Now this is what is so very interesting to me, is that i have heard nothing from any of you that your Pulmonologest has said about this subject, zinc. Me included. I do have an appointment with mine on Friday the 30 th of June and i intend to ask her all about ZINC. Report will follow. Oh no! i think that there is something new on my forehead. Oh wait. it’s just a fly. Good night. Charles “Chuck” Gerson

      • #32433
        Millie
        Participant

        Hi Charles—-I love your sense of humor.  Never lose it.  So, I’m waiting to hear back from you as to what you find out.  What is your take on the zinc/copper combo pill?

    • #32447
      Charles
      Participant

      Hi Millie and the gang. First let me correct something. I said Friday the 30th in my past onslaught of words. I meant Thursday the 30th. That said, i started taking the 50 mg of zinc and it has been 5 days now. So far i don’t feel any different. Possibly a little more thirsty, but that is the only change that i have noticed. Again, it’s only been 5 days. However, i do not see any unusual growths anywhere either, so that’s a plus. I see my pulmonologest Thursday, so it will be interesting to see what she says. I also see my GP the following week for my normal check up and of course i will ask her about the zinc, as well as she is the one who said that there should not be any major side affects. As far as zinc/copper goes, i have not heard anything about that combination. Nenner, neener, neener it’s someone else’s turn to talk. Charles “Chuck” Gerson

      • #32448
        Millie
        Participant

        My pulmonologist tells me that he doesn’t know anything about supplements.  I don’t see my GP for months and don’t know if she would know either.  Good luck and be sure to let us know what they say.

    • #32449
      Jeff Taylor-Jackson
      Participant

      Hi all,

      I mentioned this to my support group. One of our members actually wrote about Zinc and it’s properties  as part of her PhD thesis and was very excited about it when I mentioned the article.

      The chair also said that the research was “Very encouraging”.

      I said that I had rushed out and bought a bottle of Zinc from the Chemist and I am now taking a 15mg pill every day.

      The chair did add that really the Zinc need to go to the right place, so I guess he means the lungs, but with the caveat that – it cant do any harm right?

      There is an article published here in the UK about this research that I am trying to get hold of. I am not clinical so if it’s too medically technical I could ask if some one could dumb it down a bit so we may have a chance of understnading it.

      I will post again if I get the article.

      Stay well everyone!

      Jeff

    • #32481
      Phil Ryan
      Participant

      I checked with my pulmonologist and she advised me not to start taking zinc supplements.

      • #32491

        Oh interesting @philipryan… I am also curious as to why she advised against it? Did she give you any insights into that?
        Char.

    • #32482
      Tim Costar
      Participant

      Did she say why?

      • #32598
        Phil Ryan
        Participant

        To tell the truth, I don’t remember her reasoning.  I will send here another post

        , asking why.

    • #32509
      Mona Klein
      Participant

      Why should we not take zinc I’m interested in knowing why? I started taking 30 mg per day.

    • #32518
      Charles
      Participant

      Hi you all, Chuck here. As i had told you, i was to see my pulmonologist on June 30th. She was not that familiar with Zinc, so i gave her all of the information that i have read here on this site by ya’ll and what my GP had to say as well. She said that she will look into it and get back to me ASAP. You know, the usual runaround. :-} I see my GP tomorrow and will talk about it as well with her. As i have said, i am taking 50 mg of Zinc daily and do not see any change so far after 12 days. I to an interested why Phil Ryan’s Pulmonoloigist said not to take Zinc. I do have a magnet in my house and when i walk past it, it seems to start buzzing a little bit. Hmmmm!!!!
      Chuck, over and out.

    • #32538
      Millie
      Participant

      Well, Chuck, be sure to let us know what your GP decides about zinc.  I don’t think there would be a noticable difference in only 12 days.  Sometimes things are changing inside of our bodies that we are not aware of.   Let’s keep up our hope for that positive change.

      • #32557
        Pauline Korol
        Participant

        Debra, I have also have started taking zinc.  I’m currently taking 50mg a day and hoping that in the long run, it will help.  At this stage, I fear I have nothing to lose except hope.  Someone from my support group told me that she was advised to take Zink before her lung transplant and told to stop after the transplant.  She wasn’t sure why.

    • #32540
      jim nox
      Participant

      I was diagnosed in 2015. Being a data hog I have kept pretty close track of progression (6 min walk test almost weekly here at the ranch and PFT’s with pulmonologist when I visit twice yearly. Over that period initial decline was slow and fairly gradual until I took the first Moderna Covid Vax Jan 5th, 2020, and noticed a sudden 15 (or so)% decline in the 6 min walk. With concurrence of my doc, did not take further VAX.

      Because of the COVID threat, I started taking an immune support collection of vitamins and supplements (Vit C, B6, B12,  etc,) including Zinc. Since spring of 2020 I have taken daily doses of the above and the Zinc component is 50mg of Zinc Gluconate. I read somewhere that Zinc Oxide is poorly absorbed and a cheap version of Zinc. So be aware of the actual type of Zinc taken. Bottom line, as an 84 y/o male weighing around 140 lbs, I have experienced no adverse effects of the 50mg dose of Zinc daily for two years now. Unfortunately, I have detected no special benefit to my IPF/PH from the Zinc either. I am now on Oxygen 8L 24/7 and the IPF has now progressed into Pulmonary Hypertension, which as caused a much faster decline.

      I am only reporting these experiences and apparent personal results for others, since I appear to be a fairly “old timer user” of Zinc at 50 mg/d for several years and am reading a lot of questions by “new comers” regarding dosage and efficacy of Zinc. I am continuing the vitamin regimen for anti- COVID purposes, ever-hopeful that it will help with the IPF also.

      My best to Charlene and all our fellow suffers,

      Jim Knox

      • #32541
        Millie
        Participant

        Hi Jim:

        Wow.  I’ve had covid plus 2 boosters and am not aware of any decline in my lung function.  I guess ev erybody reacts differently.   I am 82 years old and was diagnosed in December 2021.  I had it for 3 years without any symptoms prior to diagnosis but was never told.   My pulmonologist tells me that I could have had it for many more years but with slow progression.   Thanks for sharing the info  on your journey.  I was told that I have severe scarring but no honeyhcomb pattern.  I guess that is a good thing.  Good luck with your future journey and keep us posted.  We care.

    • #32542
      Martha McAdams
      Participant

      I have taken zinc for years and do not remember the last time I had a cold or any kind of respiratory symptoms. Hopefully it will help slow the fibrosis as well.

    • #32545
      Sally
      Participant

      Be careful that you don’t take too much zinc as it can be harmful in many ways.  My doctor said there has been nothing medically conclusive about zinc.  He said when it gets out of mice trials and into some clinical trials, we could see some help.  But wait til then !  Zinc can be  good in moderation.

    • #32556
      Charles
      Participant

      Hi guys! Chuck here with questions and some information. First the question is, if the conclusion from the Cedar Sinai says that there is a reduction in our IFP, then why are the few people above saying that they have been taking Zinc for years and do not see any change? I am very familiar with Cedar Sinai and respect them a lot. So can anyone clear that up a bit for me? Yesterday i saw my GP and she checked me out and saw no difference in my health situation from a doctors point, not a pilmonologist view. She OK’D me for using the 50 mg zinc daily, which is now at 14 days. However, as Millie said, it’s a very short time so let’s see how i feel in a couple of months. Although i have noticed one thing different. I seem to be a little stronger. I have been getting quite week and lately that has changed. Zinc? Who knows. Just thought that i’d mention that. As far as the Covid thing goes like Jim said, unlike Jim, i have had my two shots and the two boosters and do not feel that they have interacted with me negatively at all. However, i had no reaction from any of the four shots at all, except fro the last booster i got. I did have a little pain in the arm that they stuck the needle in. But let me add that in my 80 years of being a member of the earth, i can’t remember having a cold except for maybe three times, and i have never had a headache. I don’t get the small stuff, i only get IPF, heart attacks and the like. Now that brings up a new subject. What if i was to get cancer and it was in my lungs. Would the cancer eat away the IPF scaring? Or would i have two pain in the butt problems to worry about! Very interesting huh! I am still waiting for the answer to the question i presented to my pulmonologist about the Cedar Sinai study,and when i get her opinion back i will certainly spread the news right here on this remarkable site. Stay healthy, stay happy and safe. Chuck, over and out!!

    • #32570
      Robert Griffin
      Participant

      Yes I have been taking liquid Zinc that I get from mail order. The website is vimergy.com. It definitely helps with my immune system when I feel a cold coming on. My use of  zinc keeps my cold symptoms milder and length shorter.

      I usually take 1 to 2 droppers full as my daily maintenance dose and use the 1 or 2 droppers full spread out  over 4 or 5 times  during the night and day if I have a cold.

      As far as helping my IPF, all I can say is “I am Still Here”  with no noticeable side effects from my taking the liquid Zinc. I was taking the zinc tabs  before but I found the liquid to be more effective for me.

      I hope this helps.

    • #32650
      Millie
      Participant

      Hi Charlene:
      I re-read the article from Cedars Sinai and found that it also refers to NAD and sirtuini. This NAD is a coenzyme that is similar to vitamin B3. Perhaps it should be taken as well with the zinc. You can buy both NAD and sirtuini on Amazon. Does anyone have any thoughts about this? I’d like to hear back. Thank you. Millie

    • #32652
      john styles
      Participant

      I will order and try it.

    • #32653
      john styles
      Participant

      I will order and try it.

    • #32969
      Charles
      Participant

      Hi ya’ll, it is Chuck. For some reason i have not been receiving any of all this conversation for a month or more. I don’t know why! However, i did see a new Pulmonologist and asked her about the Cedar Sinai material also she had me do a CT and she never got back to me. I called the office a couple of times and left a message but never heard back. So now i have contacted a new Pilmonologist and am waiting for my appointment to see her. That is if i don’t croak first. However, i have been on 50 mg of Zinc for over 60 days and i actually feel worse. Breathing seems harder. So i have stopped it and will wait for my new pulmonologist advice. It’s a bitch when your doctor doesn’t get back to you when you have a fatal disease. It’s like they just don’t care if i die or not. Some doctor, huh! If anyone would like her name and address it is, Laura Ann Lubarsky with Dignity Health in San Luis Obispo! Funny huh! 08/30/22

    • #33005
      John K. Grubb
      Participant

      Saw my pulmonologist today for 6 month visit after being diagnosed.

      I mentioned to her that I had joined some groups with IPF and there was some exciting research out of Cedars Siani regarding zinc.  Her response was I must of read it on Google.  I responded no I had read the research report done by Drs. Paul Noble and  Carol Liang and in laymen’s terms  they had discovered that there were some compounds/conditions in people with IPF that prevented people with IPF from absorbing zinc; that IPF patients who took zinc seemed to improve.  I asked her if she could contact them and find out their recommended protocol.  She then Google the article, scanned it and dismissed it by saying it would take years of research before that became a treatment.

      My read is she is just like someone else described most pulmonologist — too busy treating COPD, asthma, etc, to really know much at all about IPF.

      As someone said earlier you have to been your own advocate.

      Meanwhile, I will keep taking zinc, follow the research on zinc and keep looking for a new pulmonologist.

      • #33019
        Jeff Taylor-Jackson
        Participant

        Hi John,

        Throughout history, there have been people who disregard new research. Normally it’s because it’s outside of their field of expertise. Frank Whittle – Jet Engine, Isambard Kingdom Brunel – Suspension Bridge, Screw propellor, I could go on.

        Hedy Lamarr – yes the film star, went to the Navy saying she had developed a method of scrambling messages to make them secure by frequency shifting. She was told by the old geezers that it would never work and she should stick to the films. Now, all communications in the world are done by frequency shifting – all thanks to Hedy Lamarr.

        I am not dissing your pulminologist, certainly they know more than me about medicine, I’m just a Chartered Engineer, but dont be put off by their response. I’m sure the folks at Cedars Sinai are on to something. If there is no research, then there’s no cure right? If it doesnt work (worst case) then that line of research can be shelved and we look for another cure.

        In the meantime I hope that the research into Zinc has some great results, what I read (like others here) in their report is very encouraging.

        Sometimes that cure is right under our noses and might even be found by accident. Penicillin for example.

        Stay safe, stay positive!

        Jeff in England.

    • #33012
      john styles
      Participant

      Millie said above to re read the article because Zinc was taken with other 2 other additive’s and one not available. now I have been taking Zinc with the 2 additive’s and no improvement on breathing but blood pressure came down another 10 points. I will keep taking the above.

      • #33016
        Millie
        Participant

        Hi John:
        I wouldn’t expect improvement with the zinc formula very quickly. The scarring may have been going on for years. It’s a slow process and improvement will also be a slow process is what I believe. Just have patience and hope for the best. The NAD and sirtuini are available on Amazon. Continue to hang in there. We can’t give up the fight.

    • #33020
      Jeff Taylor-Jackson
      Participant

      Hi all,

      Throughout this thread it seems that there is a feeling that any research will be years before any results or drugs will be available.

      That certainly is true if the current method of clinical trails is undertaken.

      Google REMAP ILD

      Remap stands for Randomised, Embedded, Multi-factorial, Adaptive Platform.

      REMAP was used to bring a Pneumonia drug to market in a lot quicker and efficient manner. Then along came Covid and the REMAP method was again used to bring the covid vaccine to market in a short period of time.

      There is now funding to look at using REMAP for ILD and IPF, so lets hope we can find a drug that works for us in a shorter period of time than has been taken in the past.

      This is not a UK thing, this project is an international, collaborative project involving ILD experts from around the world, including scientists, clinicians, patients, patient organisations, and industry.

      Stay safe, stay positive everyone!

      Jeff in England.

    • #33544
      Mike Ktori
      Participant

      I asked my pulmonologist about Zinc and she, more or less, told me to avoid Dr Google and ‘Go home and enjoy a last Christmas’. I’m taking zinc anyway and have ordered some NADs.

    • #33547
      Jeff Taylor-Jackson
      Participant

      Hi Mike,

      Dont be discouraged by the response. Not all clinicians are as narrow minded as yours appears to be.

      There is some great reseach going on, including some lines that your pulmonolgist may never have heard about or even considered. I didnt use “Dr. Google” I read the article published in a medical journal about Zinc pathways.

      Dont dismiss everything, someday, there will be a cure.

      Keep safe, stay positive.

      Jeff

      • #33548
        Mike Ktori
        Participant

        Hi Jeff, Thanks for you encouraging words.
        Mike

    • #33553
      Charles
      Participant

      Hi ya’ll, it’s Chuck again. 11/15/22 I had read that article from Cedar Sinai about 3 or 4 months ago when it had come out. I started taking 25 mg since then and still do. I personally do not see any chance, but a recent ct scan showed very little progress of my IPF, which by the way i was detected in late 2013. My pulmonologist has no opinion on it. I am now on almost 100% oxygen, but i am still here. Keep your heads up and a smile on your face and maybe there will be something that will work. Chuck

    • #33554
      Christine McCann
      Participant

      There are several vitamins that help me feel better. D3 for sure because of the sensitivity to the sun aspect of Esbriet, Liquid B12 because I am over 50 and the enzyme to absorb at this age is gone, C, CO Q10, zinc, Magnesium, potassium because I have lost my taste for bananas. I concurred the nausea by making sure I swallow the pills with food. I was on the 3×3 day caps but have graduated to the 1×801 pill 3x a day and that is working pretty good.. My appetite has slowed and every once in a while I can’t stand the smell or taste of something (like Bananas) that I ate every day for years. Now the coffee is getting iffy. If I ever take the Esbriet without the food at the same time I get a queezy stomach.

    • #33555
      Jeff Taylor-Jackson
      Participant

      Hi Chuck,

      Hang in there mate, I agree 100% with the last bit of your comment.

      Keep the faith, trust in the good work the researchers and clinicians are doing right now to find a cure for us all.

      Jeff.

      P.S. I also did the same, I read the article and started taking 15mg of Zinc a day. My consultant knows about it, she is of the opinion “it cant do any harm!”

    • #33552
      Paul Swanson
      Participant

      I did share the article on Zinic with my doctors they were non committal and just commented “interesting “ I was probably more surprised that they had not already seen the article.Anyway,I did start taking a Zinic supplement in July and I feel it has helped me .I only need oxygen when exercising. Can’t say for sure it is a direct result but I will definitely keep taking it.

    • #33573
      José
      Participant

      I was diagnosed with IPF one and a half years ago and being at End-State. I could not accept the – years left and since there was no scientific cure, I went into the alternative meds field. I remember last year they came up with an article that duckweed may help, so I started three little pools where I grow it and take a tablespoon in a smoothie, But this summer came so did this article about zinc. So now I am taking 50MG of it but complementing it with NAD+,GOTU KOLA, CURCUMIN, BERBERINE, METFORMIN,ETC.
      I have not mentioned this to my pulmonologist because is not science and is at the Veterans Hospital, however, I do have another pulmonologist that I will talk about this next week.

      • #33578
        Mike Ktori
        Participant

        Hi Jose, I’m in a similar situation. I just got my bottle of NAD+ yesterday and I’ve been taking Zinc for a couple of weeks. I’m 78 and I don’t feel ill simply out of breath. My best wishes for you.

        • #33583
          José
          Participant

          Mike,78 is young, I will be 77 come January. I see you have read the original post. It interested me the part of the protein that transport the zinc to the necessary place. The Original post tells you how to increase this which is called surt1. I also saw Metformin helping which I am taking for my AC1. I ordered Gotu Kola and looking for a good source of DHA.
          I may sound desperate and is true. I was told 1 to 3 years and it has been one and a half already. I am on O2 but feel strong and want to start moving more which the report also recommend.

          • This reply was modified 3 weeks, 1 day ago by José.
        • #33587
          Mike Ktori
          Participant

          My pulmonologist was critical of my talk of Zinc and has told me to ‘Go home and have a last Christmas with my family’. I have only been diagnosed recently (with CPFE) but suspect that I have had this for quite some years. I suspect that it’s Amiodarone toxicity because I have been a non smoker since 12th Oct 1979 ! Most of the time I do not feel ill at all although I do have Oxygen 24/7 and a very sore nose. I’m unable to peruse my usual pastime of wildlife photography so I have taken up watersplash photography which is keeping me busy and amused. I may even produce some competition quality pictures. I find that I am now to be under a Palliative care team. That makes me more determined than ever to outlive the lot of them. My best regards to you.

        • #33595
          José
          Participant

          About a year and a half I was diagnosed with IPF. I was told I was at 1 to 3 years left, so I had this for a long time. The reason is Idiopathic is because there is no known causes.

        • #33588
          Mike Ktori
          Participant

          Oh One other thing I take is CBD oil. I get kiara from Switzerland and put a few drops under my tongue at night.

    • #33574
      Todd McMillan
      Participant

      Hi All,

      53yo with mild IPF and on OFEV for 1.5 years. I also found the article on zoom to be interesting and started taking 15 mg zinc tablets along with 300mg Niacin but the Niacin caused significant inflammation in my liver, and I had to come off it.   Be very careful with Niacin. It is known to cause liver issues.

    • #33609
      Susan Gibbard
      Participant

      I noticed in the studies themselves, they are using zinc sulfate, not picolinate. It’s been hard to find and I only found a combo of calcium 1000mg, magnesium 400mg, zinc sulfate 15mg. The directions are to take 3x/day with food.
      There are also other precursors to make the zinc effective which are NMN (kinda expensive) and “sirtuins”, found in various foods. It’s difficult to navigate through the scientific jargon to figure out what the doses should be, so I don’t think it’s as simple as taking zinc alone. But, I keep trying!

      • #33610
        José
        Participant

        Magnesium 400 is fine, but the calcium 1000mm I would stay away from. Calcium tends to build up in the brain which causes dementia. I am doing 50 grams of chromium and 100 mg of NAD+ and then complement them with curcumin, DHA, Metformin, etc.

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