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  • Looking for alternatives for IPF treatment

    Posted by Carol on November 3, 2023 at 4:18 pm

    Hi everyone! I’m new to this site so am looking forward to learning more about my condition and how to treat it without all the nasty drugs out there.

    I have had RA for at least 30 years but over the last 4 or 5 years I have had some scarring in my lungs. Apparently it’s because of the schleroderma I have also. I also have Sjögren’s and Raynauds. Anyway, it wasn’t a big problem as far as working or anything until I had a couple knee replacement surgeries over the last couple years. The first knee replacement went fine and a year later, January 28th of this year the second knee was done. That went great until I woke up during the night about 2 months later with my heart racing and short of breath. So the next day I went to the emergency room fearing a blood clot. Well, no blood clot but I had pneumonitis that turned into pneumonia. After many doctor visits close to home and at Mayo I’m a little better but still struggling. I’m not on oxygen because my oxygen levels are ok. My pulmonologist wants me on Ofev. I’m not crazy about that and I’m also on a biologic called Actemra for RA. I’m probably going too long on this but I’m interested in other alternatives to these drugs. I have ordered the Nattokinase and Serrapeptase and should have them next week. I didn’t know about these until I read about them on this site.

    Any information on these enzymes or other alternatives would be greatly appreciated.

    Thank you!

    Carol

    David Bennett replied 7 months, 1 week ago 12 Members · 20 Replies
  • 20 Replies
  • Nate

    Member
    November 3, 2023 at 6:44 pm

    Sorry to hear about your situation. I will let others who know more speak about medications and alternative treatments when it comes to IPF and other such issues. However, my grandfather on my mother’s side had severe RA. My mother has had RA for a long time as well as other autoimmune issues. After recently dealing with cancer, her pain has really flared up.

    I can’t speak from any type of medical knowledge, but I can tell you some of the things she is trying to do to help with her RA and autoimmune issues in general. She is going to try to help mitigate inflammation with her diet. What that is yet, we don’t know. She just had her CRP measured and will try an elimination diet and see what her CRP is afterwards. Assuming her CRP drops with the elimination diet, her intention is to have it tested regularly after adding foods back in.

    If her dietary changes have no influence on her inflammation, we will be back to square one.

    While it might not help, I can’t imagine lowering inflammation would hurt with IPF, or really any disease.

  • Carol

    Member
    November 6, 2023 at 4:02 pm

    @Nate

    Thanks for replying. I’m hoping the enzymes will help. I hope to hear from some others also.

    Carol

  • HughL

    Member
    November 7, 2023 at 2:45 pm

    I tried Serrapeptase for several months and no real results. I would take it at 3 am with water on my empty stomach so it would do its work.

    I ordered Nattokinase and will start on it only. I have been on Esbriet since 2015 but at 80 years old I am not far from going on hospice because I am up to 9 liters of oxygen continuously and have even a hard time walking over 45 feet without giving out of breath and have to sit down.

    I just wish I could have one day of relief.

    I wish you the best of luck and hope the supplements help you.

    • Carol

      Member
      November 8, 2023 at 6:43 pm

      @HughL

      I’m sorry for your struggle. My lung issues aren’t extreme but I’m worried about the future. I’m debating on the enzymes, wondering if I should wait until I see my pulmonologist.

      It’s so hard to know what to do sometimes. Medical doctors don’t put much hope in natural remedies. I guess we just have to hope for the best and do what we can for comfort.

      I’m going to pray for everyone on this site. It’s really a devastating disease.

      Thanks for your sharing your story.

      Carol

  • Terri

    Member
    November 7, 2023 at 3:50 pm

    Hi Carol! I have Sjögren’s and Raynauds, and Interstitial Lung Disease (ILD), which is secondary to Sjogren’s. I’m on CellCept to reduce inflammation and Ofev to slow the progression of my lung scarring. I haven’t tried any supplements, enzymes, or other alternatives. My ILD is severe, so I was very eager to slow down the scarring if the meds work. I’m on supplemental oxygen only for exercise. My only bothersome side effect with both is bowel issues, but it’s rarely diarrhea. I’m just “regular” without having to eat much fiber, let’s put it that way. 🙂 Let us know how it goes on the enzymes. I’m curious how they work with lung disease.

    • Carol

      Member
      November 8, 2023 at 6:51 pm

      Hi, thanks for your response. The Sjögren’s and Raynauds are not fun. With your Sjögren’s do you have problems with your mouth as far as being really sore and can’t eat any acidic food ? I went to an oral surgeon this morning and he prescribed some oral gel called lydex or something like that. I’ll pick that up tomorrow and see how that works. I have meds that I take that lower my immune system so I don’t want to have a biopsy because it takes forever for me to heal. I might wait to talk to my pulmonologist in December and ask about the enzymes. I’ll keep you posted to see how it works.

      • Terri

        Member
        November 9, 2023 at 2:52 pm

        I can’t eat acidic foods either. I hate it because I love oranges!

  • Curt Strickland

    Member
    November 7, 2023 at 3:56 pm

    Hi,

    I had a double lung transplant three and half years ago. About three months before the operation, I got stem cell therapy, which I believe saved my life when I probably got Covid in January of 2020, when we didn’t know it was covid.

    I don’t know if stem cell can help, you would have to talk to a professional about that. Since my operation, I haven’t been sick once. I am vegetarian and I believe that has helped. If you are interested in exploring this, you can contact me and I can put you in contact to the clinic I had mine in.

    best,

    Curt Strickland

    [email protected]

  • Millie

    Member
    November 8, 2023 at 7:14 am

    I have Class IV laser treatments. In some cases, this treatment halts the progress of the disease. It is painless and non-invasive. Look into it. Dr. Andrew Hall has IPF and has found it to be very effective for himself and other patients.

    • Polly sredzinski

      Member
      November 10, 2023 at 6:56 am

      How long have you been doing these treatments and what results have you seen?

      • Millie

        Member
        November 17, 2023 at 7:29 am

        I’ve been doing them for a year now. My PFT’s have improved. My PF is stable. I get a CAT scan in January and then I will know more.

  • Chris lynch

    Member
    November 8, 2023 at 9:47 am

    Carol I have been on Ofev for 8 months. Last week I had a stroke, one of the side effects of Ofev. ????

  • William Kim Burnett

    Member
    November 8, 2023 at 12:48 pm

    Hi Carol,

    My name is William and I also have Raynolds and IPF. I am not on oxygen except when working in the yard or exertion. I also wear CPAP at night, I was on Ofev for about 2 years when my doctors suggested that I try Cell Cept also for the Immune system problem. I decided to come off the Ofev although my Lung surgeon did not think it was best. I did it for Quality over Quantity since my disease was holding steady, to be determined. I continue the Cell Cept and watch my diet and get a lot of walking in. I am blessed with an indoor track that is level, you know the challenges with slopes and hills. I have had to make a lot of life changes such as sports I used to do but still camp, travel with portable oxygen and exercise every day. I and my wife spend a lot of time together and make as much out of every day. I also use mullein extract in my coffee with about 6 drops along with a sprinkle of turmeric and honey no sugar. I would say for me that sugar, chocolate, and dairy would be my biggest issues in this battle. also, any alcohol is bad. I try to improve my spiritual well-being each day with quite time and have been blessed by the results. I am in my 5th year. Good luck with your journey and I hope something I wrote will be of help.

    God Bless

    William Burnett

    • Carol

      Member
      November 8, 2023 at 2:18 pm

      Thank you so much for your helpful response. I live in the country so not much flat paved areas to walk on. I do think walking is the best. 10 minutes is the limit for me so far. I bought a NuStep machine for home and I try to do 30 minutes every day.

      I see my pulmonologist in December at Mayo and will ask more about Ofev and CellCept. I’ve had interstitial lung disease for a few years but this year is the first time they have referred to it as IPF. I don’t know why it wasn’t pursued by my doctors before this. Anyway it is what it is.

      I too, try to stay focused on my spiritual life and what really matters. I have a really wonderful husband who is a great blessing! God has been good in all things.

      Thanks again! Good luck with your journey!

      Carol

  • Sheila D

    Member
    November 9, 2023 at 2:35 pm

    Google “earthclinic.com” put in lung fibrous you will come up with a lot of different imput check out food grade hydrogen peroxide…. It works

  • Nancy

    Member
    November 9, 2023 at 3:04 pm

    Hi Carol,

    I have been diagnosed with PF due to CREST (scleroderma) with Raynaud’s and Sjogren’s. I take 200mg Ofev/day and I’d like to get off of it. I am too tired and sometimes so tired I only sleep and have to stop for a few days. I now have high blood pressure and had a problem with my liver until I lowered the dose from 300mg/day. I have liver tests every 3 months to monitor.

    I am about to take on some research to find alternatives and create a plan for the healthiest life. One place I’ll start is a small book on Amazon written be Lee Fogle – who has also written about his progress here – “A Matter of Breath.” He is the first to say he is not a doctor and provides no cures but his book so far is very informational and inspirational.

    I will also look into other treatments and read this forum. I hope to find a medical professional who will go through my research with me as I try to find an alternative to Ofev and a healthier life.

    Good luck!

    Nancy

    • Carol

      Member
      November 9, 2023 at 7:05 pm

      Hi Nancy, I actually just got the book A Matter of Breath today. My husband is reading through some of it. It seems pretty interesting. I hope I can get some insights into how to get a handle on this. I just wish doctors would be more open to natural remedies. I’m watching this forum pretty closely. Let’s hope we can get some answers.

  • Polly sredzinski

    Member
    November 10, 2023 at 7:05 am

    Carol, Read the book

    A MATTER OF LIFE AND BREATH

    author Lee Fogle

    Lots of great information directly from an IPF patient not from a Dr or someone who doesn’t have IPF but THINKS we know what we feel etc….
    • Carol

      Member
      November 10, 2023 at 10:11 am

      Hi Polly, I actually just got the book yesterday. Sounds like some good information there!

  • David Bennett

    Member
    November 17, 2023 at 3:28 pm

    Ofev or Esbriet really needs to be discussed with your rheumatologist in addition to your pulmonologist. PF is fairly common with other autoimmune diseases. It is the same process as IPF, it is just associated with auto immune disease instead of being idiopathic. I take a gram of tumeric 500mg twice a day with a little black pepper, (It aids absorption of curcumin.). It is an effective systemic anti-inflammatory and binds some of the reactive proteins. I have had a noticeable reduction in mucous production and decreased arthritic pain, osteo not rheumatoid. I also just generally feel better, but that might be placebo effect. You can take up to 4 grams a day. It comes in capsules as a blend of tumeric root and curcumin to achieve 500 mg.

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