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    • #26531

      On Monday I wrote a post about managing medications, following the delivery of my prescriptions in anticipation of the holidays and store closures for Christmas. It was a lot of tablets!

      One of the specialists on my team is a Rheumatologist, whom I’m very grateful for as he is always open to discussing my pain/discomfort, along with how I’m doing not only with my lung disease but also in general. It’s been my experience that he really honours the “holistic” side of medicine; taking into account my mental and emotional health, in addition to how I am feeling physically.

      I’m not sleeping very well these days, and have started to take melatonin regularly. I’m also increasingly sore in some muscles, namely my chest cavity. We haven’t really figured out why that is, however we do know my CRP levels are very high which indicates inflammation. As a result, the Rheumatologist has given me a prescription anti-inflammatory and as I add the bottle to my pill cabinet, I’m realizing I have a lot of NSAIDs in there! Of course I take only as needed, but that led me to thinking about whether or not other IPF/PF patients are prescribed anti-inflammatories.

      Have you been given anti-inflammatories since your IPF/PF diagnosis? If so, do you take them regularly or only as needed (PRN)?

    • #26544
      Fergus
      Participant

      I have had Sarcoidosis Pulmonary Fibrosis since early 2018.  As Sarcoidosis is a systemic disease I was prescribed Celebrex for muscle and joint pain which worked reasonably well. I was taken off Celebrex in September of this year because of concerns voiced by my Cardiologist and unfortunately the muscle and joint pain came back with a vengeance. I’m    Back on Celebrex and the muscle and joint pain is tolerable.

      After an exacerbation  this spring my pulmonary function decreased significantly and I was put on OFEV and use supplementary oxygen when walking or exercise.

      • #26578

        Hi @Fergus ,

        Thanks so much for sharing this experience with us, though so sorry to hear of your exacerbation! I hope you’re doing better now, they can be so hard to recover from. I also hope you’re able to manage the Ofev ok. I’m glad the Celebrex is alleviating the joint pain for you,  hopefully you can continue with it since it sounds like it helps and avoid any concerns from the Cardiologist.

        Take good care,
        Char.

    • #26556
      Steve Dragoo
      Participant

      @charlene-marshall

      Hi Charlene,

      My doctor is aware I take Aleve sometimes but now I avoid NSAIDs as much as possible because some may have a negative effect on the AFib developed while I was sick. Aleve really worked for me but I know others don’t share that experience.

      In another forum, I saw Mark listed Michael Symon has a lot of recipes on how to improve our immune system and I will look at those.  Maybe some might help you too.

      Stay well and safe these holidays…

      Your friend,

      Steve

      • #26577

        So nice to hear from you my friend, @steve-dragoo!

        How have you been doing?

        Thanks so much for sharing your thoughts on this. It sounds like a lot of patients with IPF, including those on anti-fibrotics, have been told not to take NSAIDs or avoid them as much as possible. I’m going to connect with my doctor about this and ask for clarification. I’m curious to hear what he says! Good idea to revisit the article Mark shared on anti-inflammatory foods. I’ll be sure to do that and see if that helps. Thankfully, I don’t have a lot of pain or discomfort, just my CRP is high in my bloodwork. I’ll report back on what the doctor says and thanks so much for sharing your experience.

        Happy holidays my friend – may next year but a little better for all of us!
        Char.

    • #26563
      Ron
      Participant

      I have not had a discussion with my pulmonologist or primary care physician regarding treating pain as I do not suffer it much at all. Sometimes the intake nurse at a doctor’s office will ask if and how often I take anything for pain and I tell her I take acetaminophen (Tylenol) for most types of pain and a topical gel containing capsaicin for deep muscle pain. It is rare I need either.

      The doctors have not commented on these answers other than to continue to stay away from NSAIDs and ibuprofen. They all approved acetaminophen.

      I attribute the lack of pain to my consistent use of natural anti-inflammatory supplements and foods with high levels of antioxidants. The antioxidants help control inflammation and are also important to organ health all over the body.

      I am currently taking 300MG daily of Teavigo Green Tea Extract containing 94% EGCg which is anti-inflammatory plus I drink at least one cup of green tea daily. (see the message thread regarding a study of the effects of EGCg or green tea in managing IPF elsewhere in these forums.)

      I know that in my own family everybody reacts to a pain killer in different ways. In the past, I found naproxen sodium (Aleve) very helpful for muscle pain, as were Celebrex for muscle and joint pain. Ibuprofen did little to help. For other family members, the results were just the opposite. Acetaminophen didn’t use to help me much, but since I have been on this anti-inflammatory binge, then acetaminophen has worked well.

      Ron

      • This reply was modified 10 months, 1 week ago by Ron.
      • #26575

        Hi Ron,

        This is very helpful information, thanks for sharing! Thankfully, any NSAIDs I’ve ever had prescribed are just to take as needed, since I don’t deal with a lot of pain on a regular basis either, which I’m grateful for. However, my CRP is elevated in my blood work which does indicate a lot of inflammation and I think this is why the doctor wanted me to have an option on hand to help eliminate this. I do try to focus on natural remedies, especially foods, that will eliminate inflammation too…. good reminder! Wishing you a wonderful holiday season and all the best for 2021.

        Sincerely,
        Char.

    • #26568
      Suzy42
      Participant

      Hi Charlene, I have been told never to take nsaids because of Ofev, I have arthritis and am only prescribed paracetamol and codeine.

    • #26572

      Hi @suzy42 ,

      Thanks so much for sharing and welcome to the forums! I really appreciate you taking the time to share this with us, as I am also on Ofev and want to ask my pulmonologist about taking NSAIDs (even as a PRN) while on this anti-fibrotic. I learn so much from these forums, and I am very grateful.
      Sincerely,
      Charlene.

    • #26580
      Carlo De Pellegrin
      Participant

      I have dealt with arthritis most of my life. I have taken a variety of pain killers with not much success. Summer 2019 I had cortisone injected into both hips and one knee. I had two PRP ( platelet rich plasma ) treatments on both hips and one knee. The cortisone and PRP were moderately ,but very short term, successful. I also went through two pre-operative  appointments at two different hospitals to access for surgery and stopped both.    Last January I met a guy in a local restaurant in Nuevo Vallarta, where I have spent many winters who told me about a natural   anti-inflammatory that he bought at a candy store in a nearby village. Having nothing to lose I went bought a couple of bottles of same and have not had arthritic pain since. Since that time I have introduced a dozen or so people to this stuff who all  have found it works for them . It is called RMSOL manufactured by: ‘Segoe UI Historic’, ‘Segoe UI’,  Tienda Naturista Don Jose Gracian.

      Lots of material on google about RMSOL.  No side affects for me in 11 months. I was diagnosed with IPF in September, 2020.

      • #26623
        Suzy42
        Participant

        I have athritic pain in my hips and knee and I was told the Ofev doesn’t mix with nsaids , so not to take. I have to have codeine which ofcourse doesn’t take down inflamation. When i take a break from Ofev i taked nsaids then, wonderful relief.

        Take care and Happy Christmas

    • #26582

      Hi Carol,

      Thanks so much for taking the time to share this with us! It’s always helpful to hear about resources/options that help other patient with similar issues we have. Glad it’s been something that has helped you and it sounds like various others as well.

      Much appreciated,
      Charlene.

    • #26629

      Hi @suzy42

      Thanks so much for sharing the advice your doctor gave you re: the NSAIDs. Seems a lot of people had this told to them if they were on Ofev, so I’m definitely going to follow up with my physician. I appreciate this forum, and the knowledge shared here, so much!
      Char.

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