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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 am so sorry that you are going through this. Stay hopeful, long Covid is
a very new illness and as more information and research comes in, I am
confident that we will have more effective treatments.
My symptoms were cognitive issues, short term memory loss, word recall,
concentration, extreme fatigue, insomnia, joint pain, balance problems.
I had pre-existing depression with anxiety for which I take lamotrigine 200
mg, as a mood stabilizer. Until I started low dose naltrexone, I took
Ambien for chronic insomnia. My depressions did not respond well to SSRI
like Efexxor and Prozac at all. There was no difference until I started
taking lamotrigine (Lamictal) that my mood stabilized and I feel normal
now.
The protocol for naltrexone is straightforward. The starting dose is 1.5 mg
for 2-3 weeks, then the full dose is 4.5 mg once daily. It is one tenth of
the dose of naltrexone used for opiate addiction treatment. It is very safe
and well tolerated.
It appears to have an anti-inflammatory effect through modulating cytokine
activity and providing support for glial cells that supply the neurons with
nutrients and oxygen.
I am a veterinarian , so it was easy for me to research and scan through
medical studies that mention “low dose naltrexone” LDN. There are numerous
papers relating to its use in chronic fatigue syndrome, fibromyalgia and
pain management using LDN. Most of the research for post Covid was done at
Mayo Clinic and Stanford University. These are preliminary research studies
that are in the process of acceptance for publication. Mostly pilot
studies. They combine naltrexone with NAC (a supplement available over the
counter)
My doctor agreed to try a therapeutic trial based on my requests and
called in a prescription to the Mayo Clinic in Minnesota main hospital
pharmacy. They shipped the medication directly to me. It is also available
in compounding pharmacies nation wide and inexpensive.
Depression is really hard to live with. There is no simple answer. Mine
were chronic and recurrent and worse during the winter months. Very
profound and debilitating. Part was a genetic predisposition and part
circumstantial life experiences. I have always been sensitive to sound and
light with a marked startle reflex. What helped me most was mild exercise,
just a 25-30 minute walk - recently read about the importance of
lengthening stride rather than walking faster for full benefit of cardio
and joint motion. I use an app for meditation / relaxation on my phone
called Insight Timer. It helps me relax and sleep, which has always been a
challenge for me. Now I focus completely on the breath and I’m able to
eliminate racing thoughts and anxiety by just becoming completely aware of
breathing. It’s a skill that took me a month or two to get better at, but
it does work. Walks in nature. Social gatherings with friends, activities
you enjoy. A gratitude journal. Minimal alcohol. Every small part
contributes.
Be cautious with tranquilizers especially Xanax . Highly addictive even
when used as directed, trying to get off them causes profound rebound
anxiety far worse that what I started. If necessary use a longer acting
sedative benzodiazepine like diazepam.But they are all likely to induce
tolerance and dependence so use with caution. Getting much better sleep
with naltrexone helped with my concentration, energy and mood, sleep is
such a crucial restorative function and that has improved greatly since I
started naltrexone 4.5 mg and NAC. Every little step counts, so the more of
these things your can incorporate the better. I also Eat healthy food, a
Mediterranean diet with fresh vegetables (all different colors for the anti
oxidative effects) green leafy , fruit, avocados, berries, salmon, lean
chicken, nuts almonds and walnuts, olive oil, legumes ie beans, lentils, no
processed foods minimal starches. I’m also pre-diabetic so this type of
eating helps. It’s not a ‘diet’ it’s just the way people in the
Mediterranean eat.
All these things combined help. Do what you can. Pace yourself. Preserve
your energies. Give yourself grace. Try to find supportive positive people
around you who understand and empathize, and most of all, maintain hope.
Find a primary care who is attentive, and listens to your concerns and
works collaboratively with you.
I wish you all the best in your journey towards recovery.
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4 ReactionsI’m currently treating symptoms with rufinamide and Guanfacine + NAC.
Can someone please provide an explanation what Guanfacine is supposed to do for LT Covid and also Naltrexone?
Right now I am suffering from severe off the chart anxiety/depression since Covid, weight plummeted down to 89 lbs, I'm trembling and can't even rest or sleep because if I do and close my eyes, my body/mind goes into a 'flight or fight" mode and jolts me up. It's horrible!
I'm on Zoloft and it's not helping at all. My symptoms are extremely worsening since onset of Covid in '21 (I believe I had a case prior but wasn't tested) and I have no support and Docs here in Wisconsin don't have a clue how to even treat this. I'm so very scared and alone.
I was recently told at Mayo I have a groin hernia but they can't do the surgery due to my current weak condition and weight.
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1 ReactionLDN is thought to increase endorphins and modulate glial cells (overactive glial cells are believed to contribute to chronic pain). It’s also believed to have an anti-inflammatory effect. From that, people with chronic pain or chronic conditions may be able to have improved symptoms, i.e. improved sleep, pain level, concentration, energy.
https://weillcornell.org/news/what-you-need-to-know-about-low-dose-naltrexone
I’m not familiar with guanfacine or it’s off-label use for long covid..
I am curious about NAC and it’s recommended dosage for this, if anyone has any information to share about that part of it?
Thank you for sharing this. It’s really helpful information, but also good to hear of someone who’s persisted and I’m so happy for you that you’re doing better.
I take LDN, but haven’t heard of taking it with NAC. Do they combine it with the LDN, and do you know the dose?
This was bothering me, so I finally Googled it lol, and this post and paper popped right up. I think this might address your question.
Did the physician who prescribed it not explain why they suggested it?
https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/#:~:text=Patients%20also%20took%20600%20mg,to%20resume%20their%20normal%20activities.
https://www.sciencedirect.com/science/article/pii/S2667257X22001000
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.
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.
Thanks so much for the answer on the Mayo Clinic protocol you are using. I'm unsure, and others have also asked, about the dosage for NAC. You said "combined with supplement NAC". Do the pharmacists compounding the LDN add that supplement to the same capsule? Or do you buy the NAC over the counter and take it separately? And in either case what's the dosage and what is its mode of action in helping with long Covid.
Thanks so much for the research into the published research ongoing at Mayo and Stanford. Also, your words of encouragement keep up our spirits -- another step toward recovery.
Hi- I saw this post and was wondering about the same thing. I found this, which I think may answer some of the questions. I’m really intrigued.
https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/#:~:text=Patients%20also%20took%20600%20mg,to%20resume%20their%20normal%20activities
I won’t take a stab at trying to explain the science behind the suspected mechanism of action lol, maybe better to hear it from the researchers themselves.
The study they reference can be found here: https://www.sciencedirect.com/science/article/pii/S2667257X22001000
From what I gather, NAC is an anti-inflammatory (the dose was 600 mg daily in a separate supplement). And the Guanfacine is an ADHD medication, but has been used successfully off label to improve cognitive function in TBI (the dose they reported using was 1 mg nightly, increased to 2 mg if the person tolerated it well—it seems that is the standard dose for either ADHD or TBI).
The sample size on their study is very small, but considering NAC is relatively safe and the guanfacine is also a known medication that in theory a PCP might even feel comfortable prescribing if it’s used for ADHD, that also has evidence behind it being used for TBI…it seems relatively low risk to try?
I don’t take either, but my PCP had brought up NAC.
I do take LDN; those dosing regimens are easy to find online. The typical dose is 4.5 mg with a slow titration that seems to depend on what the doctor/patient decide is best. I started at a quarter mg and worked my way up to that. Some people start higher (and it is also very low risk of side effects).