• 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.

Log in to reply