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Anyone out there on Guanfacine?
Post-COVID Recovery & COVID-19 | Last Active: Jan 29 1:24pm | Replies (60)Comment receiving replies
Thanks Emo. The Doc (endo) who prescribed the Naltrexone said he doesn't know how to treat LT Covid, but heard it might benefit, "WHY NOT TRY IT." Truthfully, taking an Rx is serious and you want to know whoever is prescribing it is well aware of the medication and monitoring it for you, due to side effects or titration needs.
The Doc at Mayo who prescribed Guanfacine said the same thing, 'it's good stuff, why not try it." When I heard it could lower blood pressure, I had concerns given mine is already low given my extreme weight loss and he will not return my numerous messages.
My experience at Mayo was terrible, aside from the heart specialist who was such a sweet and caring man and 91 yrs old. I wasted precious time and thousands of dollars going to Mayo. It was a nightmare and talk about stressful! I will admit it is a tight run ship, the building is beautiful but so big with about 18 floors and you're running around miles and miles just to get to one end of the building to the other between many tests and Doctor's offices. In the very end I didn't receive any answers and the Internal MD I saw said he couldn't really help and I should have considered going to the Long Term Covid Care Clinic which I wasn't even aware existed until he informed me as such.
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Per the paper, Guanfacine has been used off label for TBI to improve cognitive function, but you’re right and a potential side effect is listed as low blood pressure. There’s really no way you would know if you’d experience side effects until trying it. If there’s something I’m concerned about that I want to try, I start with a very low dose (if it can be done safely). I suppose it depends on if you’re willing to take the risk of the potential side effects to find out if it might help because right now the study cited was so small and there are only anecdotal reports from others about whether or not it helped.
It sounds like the internist you saw was trying to treat the long covid symptomatically and based on the emerging research. In my experience with nebulous chronic pain conditions, that’s usually the route taken, to address the symptoms and keep trying to knock off as many as possible and improve quality of life.
That is definitely frustrating to not have a response though.