Sarah Tee Posted May 11, 2023 Report Share Posted May 11, 2023 I suddenly remembered that I haven’t tried desmopressin and am going to ask my specialist about it. I have read that there are monitoring requirements (blood test) and you have to do watch your fluid and salt intake. Can anyone tell me a bit more about this, or point me to a resouce about it specific to dysautonomia? I am finally getting in to a local(ish) GP clinic in June, so my new GP will be able to order blood tests and keep an eye on me in person, which is good. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 11, 2023 Author Report Share Posted May 11, 2023 I am a bit worried it may be too hard for me to manage though. And I am a bit unsure of my current specialist. My previous one was a clinical pharmacologist – maybe I need to go back to him? Quote I would like to add a strong note of caution to the use of desmopressin. This drug can effectively raise blood volume and constrict blood vessels, which can be helpful in managing orthostatic intolerance syndromes. But desmopressin must be monitored carefully by a skilled physician, with lab tests, because inappropriate or poor management can result in severe medical consequences, including life-threatening hyponatremia, fluid overload, and hypertension. Quote from Dr Lucinda Bateman https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/desmopressin-ddavp/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 11, 2023 Report Share Posted May 11, 2023 Have you considered Droxidopa? might be an easier drug to manage. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 15, 2023 Author Report Share Posted May 15, 2023 Thanks, @MikeO, I will mention that one too. Edit: Just checked and it’s not generally available in Australia. You can apply for special permission but I don’t think I would qualify. Never mind, if it does become available in the future I will try it! Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 15, 2023 Report Share Posted May 15, 2023 7 minutes ago, Sarah Tee said: Thanks, @MikeO, I will mention that one too. Edit: Just checked and it’s not generally available in Australia. You can apply for special permission but I don’t think I would qualify. Never mind, if it does become available in the future I will try it! Sorry to hear this. I would have thought it would have been available as the drug has been around a while. Here is the mfg's link it you need it. https://www.northera.com/ Quote Link to comment Share on other sites More sharing options...
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