• Starting out with supplements for PH

    Posted by brenda-denzler on December 12, 2022 at 9:46 pm

    Folks,

    My pulmonologist has started me out taking four supplements for my PH and the impaired systemic oxygen saturation problem that I have. The four are Co-Q 10 (which I take as ubiquinol), L-carnitine, Vit. B2, and creatine powder. I’ve been taking them for about 6 weeks, now, and I can’t figure out if they are helping or not. I think maybe they are, but I can’t quite my finger on it.

    Is this a typical first approach to treatment for new PH patients with only mild disease?

    Have any of you taken these supplements? And if you did, for how long? And what kind of effects did you notice?

    Brenda

    jen-cueva replied 1 year, 3 months ago 5 Members · 7 Replies
  • 7 Replies
  • v-r-peterson

    Member
    December 13, 2022 at 2:53 pm

    I haven’t heard of supplements being used as a first approach to PH, so I’m wondering if this is more for your impaired systemic oxygen saturation. I do know it takes supplements at least 6-8 weeks before you’ll notice much effect, something I learned during a beginner course on natural healing (which I took years before my son was diagnosed with PH, so the course was unrelated to anything I know about PH).

    • brenda-denzler

      Member
      December 13, 2022 at 6:01 pm

      Mama Bear, that’s what I’m noticing. I’m about 6-7 weeks into taking them, and I think I’m feeling a little better. Stronger, and maybe with a little less severe SOB. Maybe. I’m trying to figure it out.

  • katherine-gentil

    Member
    December 13, 2022 at 5:02 pm

    Those are good, and I also add curcumin for an anti-inflammatory support option, as well as resveratrol and vitamin C. Also get your serum vitamin D level, checked and supplement with D3 as needed to get it above 50 ng/mL Most people are low innD and don’t know, especially in the winter. Vitamin D is critical to support the immune system to help reduce the severity of respiratory illnesses.

    As to your question as to whether this is typical, it is not typucal for Drs to recommend supplements, so I am thrilled to see that yours has. It is rare to nonexistent for medical doctors to recommend nutraceuticals for their patients, and this is one area where they fail. There was actually a case where an individual had pulmonary hypertension due to oxidative stress in the body, and it was reduced significantly through IV Vitamin C supplementation. Nutraceuticals should always be the first line of defense to support the body and drugs should be considered next, yet our medical system tends to go to drugs first, nutraceuticals never.

    • brenda-denzler

      Member
      December 13, 2022 at 5:58 pm

      Thanks for the info, Katherine. I also take other supplements, including D3 for a long, long time. And zinc. And when COVID hit, I started alternating pau d-arco and astragalus each day. I’m tapering those off, now.

      It is precisely because allopathic physicians don’t tend to prescribe supplements that I am wondering why mine did. He made a passing reference to trying to deal with the question of whether or not mitochondrial function might be involved in my impaired O2 extraction, but it was such a fleeting reference that I’m not sure I heard right. And I’ve been wondering whether he told me to take these things because he really believes they might help, or whether he was just “humoring” me by giving me something that would be relatively harmless because he didn’t feel anything stronger was necessary.

      I just mistrust doctors a lot. And I don’t have a relationship with him for a long enough time, yet, to implicitly trust what he says and feel safe in taking it at face value.

      Brenda

      • Colleen

        Member
        December 14, 2022 at 11:03 am

        @brendad53 Cullen is on several prescribed supplements and has been on a few of them since he had PH.

        Currently he’s on and has been since transplant: Calcium, Calcitriol, Vitamin D3 and Magnesium.

        To be honest, I’ve always been skeptical about the benefits of vitamins. My doctor recommended B6 and B12 due to deficiencies that he believed was causing my neuropathy. Since being on them for several months now that symptom has almost completely disappeared. Now I’m a believer.

      • brenda-denzler

        Member
        December 14, 2022 at 11:37 am

        I was married to a health food believer for more than 10 years, so I had opportunity to learn what supplements can do. When I got inflammatory breast cancer, I consulted with a nutritionist and then took a carefully selected set of vitamins to help me through the treatments. When I got peripheral neuropathy, like you have had, I took some extra supplements to manage it. Within a few days, my pain level went from 9+ down to 3-4, and over time, it completely ended. Normally supplements are a long game, not a short one. But sometimes they do seem to work incredibly fast.

        I’m noticing, right now, that the set of supplements I’m taking seem to be diminishing the neuropathy that came back, later.

        Despite my positive experiences with supplements, I am so surprised that an allopathic physician would prescribe them that my old medical PTSD has started to whisper in my ear that he was giving them as a placebo, to try to make me happy, rather than to try to actually help anything in a concrete sense. So it does me good to hear that Cullen’s doctor has him on some supplements.

        I realize that this is my suspicion working overtime, but I’ve been dismissed and ignored by the medical world for so long with these breathing/fatigue symptoms that I no longer trust easily. (Or more appropriately, trust even less easily than before!) Thanks for letting me know that my pulmonolgist’s advice was not just an attempt to fob me off, again, but a true attempt to suggest something that might help.

    • jen-cueva

      Member
      December 14, 2022 at 2:13 pm

      Hi @brendad53, I have yet to hear of a PH specialist ordering supplements as a first approach. However, I have heard of them adding supplements to the other medications specific to PH.

      Often, supplements can help so many issues. But as you mention, it takes time to see any improvements and is usually for long-term use.

      @mkgentil, it’s great to see you contribute. How have you been? I haven’t seen you post recently.

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