• Are there still people around who have had benefit from spirinolactone? Are there important things to discuss with the doc about how it interacts with other meds? Thanks.

  • @Aur are you looking at using spiro for ME/CFS or for something else? I just can't rememebr if I've come across it for ME/CFS before. As a diuretic I guess you might want to consider if orthostatic intolerance is an issue for you and how this might work with the other reasons you may need to take it.

  • @KateH_Em_Aus
    Thanks for your reply. The medical advisor for ANZMES, Dr Ros Vallings, mentioned in a talk that spirolactone may be showing immunomodulation properties as well as antiviral properties. It reminded me of immunovir or isoprinosine pranabex. I once had a good response to isoprinosine. I do have POTS, after dealing with the usual orthostatic intolerance until it progressed to POTS. I have some meds for POTS and am hoping for saline infusions.

  • @Aur super interesting, I will definitely read up further!

  • @Aur I have taken spironolactone 100mg since before I got ME, and have not really felt an impact on my CFS when I’ve stopped taking it for a month or two here and there. I take it for a hormone condition. That said, my doctor who is well versed in CFS research had mentioned it’s come up in the research - but I’m still not sure it’s something he prescribes just yet on for ME treatment . I’m tired and I just used ME and or CFS in all those sentences interchangeably 😊💛

  • I was just listening to a video of a talk from Dr Vallings that she gave to ME Support Auckland last February. It took awhile for them to upload it to their youtube channel, I was told. Seems she heard remarks from Dr Daniel Peterson in Nevada US (long time specialist; people go to him for Ampligen still, I think) and he said it was showing some immuno-modulating properties. So I think that is where my story comes from originally. It does affect the hormones, from what I read, and can be a diuretic so that should be taken into account. Most likely one would need their bloods checked for potassium and sodium? If anyone wants to watch that video, here is a link.link text

  • I was very surprised to see this post!

    I took Spirinolactone many many years ago to manage symptoms of PCOS.

    I was actually taken OFF this medication because it was suspected that it was causing fatigue/headaches.

    I would be very curious to learn if others are finding it useful as this is the first I've heard of it being used for the treatment of pots/cfs.

  • @coco It seems contra-indicated for POTS. It acts as a diuretic. It would have to be managed. I benefit from the higher dose antivirals, but they can have a build up effect that is hard on the body eventually. So I thought I'd just give it a trial and see. My GP will need to monitor.

  • I was one of the first patients on the RAH study (Dr Richard Burnett, Endo) and associated UofA exercise study (Prof. Scroop) from the '90s, Spironolactone was the drug used in the double blinded Xover trial. I was also scanned in a nuclear scanner with a healthy control person, this determined I was about 40% low in total body potassium which is essential for muscle and neurological functions

    For me it was an immediate miracle cure for all of my symptoms for approx 20years, some PWC on the research study got worse, others had no change, not an unusual situation with CFS.

    Spironolactone is a Potassium sparing diuretic and forced the K back into my depleted cells, as an androgen and being male I transferred over to Amiloride (Kaluril) also a potassium sparing diuretic for the next 20+ years of freedom from all ME/CFS symptoms.

    Circa 2018 Amilode was ceased, no longer manufactured and no longer available. Over the next months symptoms gradually started to re-appear and in 2019 I went back to Spironolactone (Spiractin). Over the next couple of years I titrated up from a low dose to my current dose, all under the advise of my Endo who helps me look after my Type 1 Diabetes, interestingly, Diabetes came in my adulthood simultaneously as I started the Spiractin in the trial and has stayed permanently. I assume all this is part of the same auto-immune type issues, that everything is related.

    Spiractin at my current dose is no longer working as it used to for me, a number of symptoms have returned and remain but so far not in the same intensity or multitude of my earlier decades.

    The research studies from the 90's have exhausted my efforts to locate and I was employed by UofA for years. There is a lone article from the SA ME/CFS society of a lecture at which I was present presented by Prof Scroop on the Exercise/O2 study, however the potassium part of the research has 'disappeared', Dr Burnett retired and I have no idea of the dosage used in the trial.

  • @Terry this is absolutely fascinating thank you for sharing. Do you have any idea if simple potassium supplementation might have the same effect or is it a different mechanism?
    I have to take potassium supplements cause fludrocortisone depleted my levels but afaik they were fine before the fludro.

  • @river Potassium supplements do not work in the same way. The body maintains your blood K levels to very fine tolerances for your safety and well being, any excess is excreted through urine and perspiration.

    In my situation being low in total body (cellular) K the problem is getting the K returned into the cells. In the 'cellular pump' action of muscle cells for example, contraction replaces the potassium salt in the cell with sodium using the blood as the exchange medium, on relaxing the reverse action applies, for some reason the potassium return to my cells is inhibited leaving excess in the blood to be excreted and the cells low in K.

    After time the muscles can no longer function correctly leading to fatigue and lactic acid production, the low K through the body affects the nervous system resulting in many of the CFS cognitive and similar problems.

    At least this is my understanding from what I was told years ago. Supposedly the Amiloride (or Spiro) restricts the excretion of the excess K from the blood and somehow forces it back into my cells, hence the term potassium sparing diuretic.

    All this was proven in me through medical tests and procedures some of which I believe are not longer able to be carried out (another story).

    Now all of this applies to my body and whatever action is in play to cause the problem, it does not necessarily apply to other people, as previously mentioned in the 12 months of trials nearly 30 years ago some PWCs symptoms worsened and others had no effect. In those of us that improved some became T2 diabetic and I became T1 and I have no idea of the mechanism involved.

    The upshot is, you must seek medical advice from your GP and possible be referred to an Endocrinologist I suspect.

    I have searched for the original research data in recent years to no avail and I have had the use of the University Bar Smith Library resources, my two Daughters in Law who are medical research Doctors, two GPs and my Endocrinologist, nothing came up.

    I placed my posts here not to give people hope or advice but because in answer to the original question I am one of the few people who have had direct involvement with ME/CFS research involving Spironolactone. Terry

  • Thanks @Terry I really appreciate your taking the time and effort to reply. I am one of those people who responds well to higher dose antivirals. The only one I have access to is acyclovir and I tend to hoard it, to use when I need to think or function more normally.
    link text

    When I developed shingles a few years ago - it was bloody awful that pain - but after a few days of the prescribed dose of acyclovir, so many of my ME symptoms seemed to vanish. I was a bit shocked but I have known people who take the higher dose antivirals for their ME, so I don't know why I was so surprised.

    These same people, though, tell me that they have to go off these antivirals now and then to preserve their organ function. They crash of course.

    So I avoid any medication as much as possible, because I enjoy staying alive and having my organs functioning well. I do respect whatever people choose to do, however, because quality of life is so important.

    I guess I'll see what my GP has to say about spironlactone when I see her next.

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