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Anyone out there on Guanfacine?
Went to Mayo Clinic to get answers. Internal MD I saw said I have long term Covid. I had a mild case in Nov '21, but a few weeks later the nightmare began. With each and every passing month, new terrible symptoms appear. As of today, I am in such agonizing pain throughout my entire body. It's a combo of stabbing-like pain and burning pain. Every morning I awaken to trembling in my chest and then the pain kicks in. I can only sleep (if at all for 3-4 hrs. Tried everything.
My immune system is attacking itself. I even developed a chalazion on lower eyelid, formed and abscess, 2 surgeries, came back again, and dry eye issues now. I also have ear pain and buzzing. I never had eye issues or anything prior and was so very healthy, like all of us.
Covid has taken the life I once knew away.
The Doc I saw prescribed Guanfacine. He said, Covid causes inflammation everywhere to include the brain and puts us in "flight or fight mode."
The BIGGEST problem I'm having is I have tried for weeks to get a hold of the Doctor I with a question on the Rx. I sent several messages through Mayo mychart, called again and again (9 times) to please have him call me and he will not and just deserted me.
I was told by his assistants he's "too busy." I can't believe a human being, especially a Doctor I drove 4.5 hrs to see and spend $$$$ doesn't have the decency to care enough and call me.
I don't know where to turn and can't stop crying in pain and mysery.
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I previously took 1-2mg ER/ day for post covid hyperhidrosis and increased heart rate/ blood pressure. May take again in combination with a new med.
Is it a question you can ask your pharmacist🤷🏻♀️
Maybe. I used an online prescribing service, RedboxRx. The problem is that it's being prescribed “off label” for long covid, when it was originally meant for children with ADD, so the nuances of it's use for an older long hauler might only be known by a medication psychiatrist who's been working with long haulers. Probably not too many of those. I'm guessing that guanfacine's mechanism of action is somewhat different on a sixty something brain than a child's ADD brain. The only detailed internet info on guanfacine I could find was a very helpful list of meds, supplements, and foods that could be problematic. That list was not in the drug info pamplet.
I suppose the ones who were treated successfully don't come back to the forum anymore. We need those folks to help us learn what treatments worked.
I have a Rx for both, but afraid to try either given it's just in trial phase. Mayo Docs are prescribing these drugs, but I don't understand how it would eradicate the virus within us? What I want is to get this darn beast of virus out of my body and continuing to attack my immune systems and organs. I want to go back to pre-covid days, for all of us. Sorry for whining. . . I guess I need a little cheese with that whine.
Last few days I've dealing with a burning tongue, lips and throat 24/7. making it difficult to eat and I'm already down to 90 lbs wet. I'm also finding it hard to swallow. Went to Doc and he felt lymph nodes in my neck, which is not good. See a sore, red spot on my tonsils and was tested for Strep which turned out negative. I had a Covid test at the same time and waiting for results.
I've been suffering now for almost 3 yrs and with each and every passing month new horrible symptoms appear. How I wish I could have been treated years ago. There must be sort of anti-viral treatment out there.
I read today a Doc in Boston treated woman with an anti-viral med because her bloodwork should she still had 60% of the virus in her blood. Not sure why Mayo is not doing such tests. She was really ill at the time, and it gave her an anti-viral infusion (3 times) which is pretty much the same medication used for HIV, Herbes, etc., and she's 90% better and now pregnant and happy.
We should also have a post on this forum for all the Long Haul Covid'19 clinics in the US for folks.
Hi there- I've been taking LDN (low dose naltrexone). I actually started taking it about a year before my COVID infection (started taking LDN in 2021, got COVID in November 2022 and diagnosed with long COVID this month), for chronic pain.
I am not familiar with guanfacine, but if you have concerns about trying new medications or a sensitivity to medications, I'd say LDN is worth a try. I have central sensitivity (the central nervous system aka brain becomes hypersensitive to new experiences and things that should not cause pain--the condition has a lot of overlap with long COVID) that affects how I respond to medication, and I was very apprehensive about LDN. But the more I learned about it, it's a very safe and very almost benign medication. The side effects as compared to other things recommended for chronic pain are very mild and even if you have side effects (assuming you start with a low dose and titrate slowly), the half life is so short that it's very easy to stop and wait until your symptoms get back to your baseline.
And this is coming from someone who pondered the idea of taking LDN for months upon months.
My long COVID situation is a little different because I had chronic conditions before my COVID infection with similar symptoms. The symptoms had improved, but with COVID infection got worse than before with even worse fatigue than I've ever had. The lines for me are blurred between whether it's long COVID or COVID infection exacerbating my pre-existing conditions. Originally, my conditions (POTS, small fiber neuropathy, sereonegative spondyloarthropathy--an inflammatory arthritis, and central sensitivity syndrome) were suspected to be brought on after a viral infection. Sadly, we're not surprised COVID infection even after vaccination and with Paxlovid triggered more and worse symptoms.
I shouldn't be awake this late >_
Oops, looks like my post got cut off. I tried to share the direct link to where I wrote more about my experience with LDN: https://connect.mayoclinic.org/comment/889113/
Sorry for the delayed response. I looked up my medication and it just says 2mg tablets, so I don’t think it’s extended release. The instructions are to take a bedtime which I assume is because one of the side affects is sleepiness. I have not noticed any change - neither sleepiness nor insomnia.
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2 ReactionsI started low dose naltrexone (LDN) 4.5 mg once daily combined with supplement NAC as per Mayo Clinic protocol. I requested that my primary care doctor in NYC call in the prescription, I feel significantly better: better cognitive function, better sleep, minimal fatigue - functioning as well as pre Covid. Very happy with effect. Safe, negligible side effects. Well tolerated. Effect noticeable very quickly within a week. Good luck !
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4 ReactionsMay I ask, how is the NAC supposed to help? What symptoms was it recommended for? It’s something I discussed with my PCP, but as a histamine stabilizer. I bought a bottle but I’m always unsure of supplements so it’s just sitting there with the rest of my medications, and I’ve only taken it once. Thanks for sharing!
Can you provide a copy of the Mayo Clinic protocol? Where did you have your primary doctor call the prescription to ? I'm hoping for the same good results for my husband as you experienced. You've given me great hope; thanks.