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Did PAXLOVID also relieve your arthritis and autoimmune symptoms?

Posted by annewoodmayo @annewoodmayo, Jul 15, 2023

Hi, everyone

I have been diagnosed with autoimmune diseases.
The diagnoses have changed over time (lupus, not lupus, spondyloarthropathy, akylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, Raynaud's, Sjorgren and maybe others that I have forgotten... sorry about the spelling).

When I took Paxlovid for Covid, many of my symptoms disappeared or were significantly reduced.

Has this happened to anyone else?

I'm thinking that perhaps my autoimmune disease is somehow based on a VIRUS, since paxlovid is an anti-viral and it was like a miracle cure for my symptoms.

I told my rheumatologist about it, but I couldn't get her to focus on the logical connection between the anti-viral (paxlovid) and the reduction in my symptoms. It was very frustrating. I actually cried in my car after the appointment.

I think this could be a game-changing piece of evidence in my medical treatment and diagnosis. And maybe for other autoimmune disease sufferers, too! But I don't know where to turn with this evidence.

What do you think I should do? What doctor should I go to?
My primary care doctor probably won't offer anything; he never intervenes in my rheumatological care.

Please let me know if you had the same experience: an anti-viral medication (paxlovid or another one) reduced your autoimmune/arthritis symptoms.

I searched around online, and it was hard to find and hard to understand information there. In the CDC's PubMed, I found one source that indicates the possibility that immune suppressing medications can reactivate the Epstein Barr virus in some patients. Epstein Barr causes fatigue, among other symptoms, but fatigue is one of my worst symptoms.

Thanks!

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20mnthssick | @20mnthssick | Mar 18 4:29pm
In reply to @jstugaines "Yesssssss!!!!!! My story is a bit different, but same results. I developed some type of Arthritis,..." + (show)
@jstugaines

Yesssssss!!!!!!
My story is a bit different, but same results. I developed some type of Arthritis, or Arthritis like disease, after getting Rocky Mountain Spotted Fever. Pain at times is 10/10 in my hips, knees, shoulders, and especially in my wrists/hands. It is unbearable at times and Meloxicam only provides moderate relief.
I tested positive for Covid for the first time a month ago & my doctor started me on Paxlovid. On day 4 of 5 being on Paxlovid I started feeling like my old self, and 2-3 days after I stopped taking it I felt "normal". I was so happy.
A month later and all the pain, stiffness, and swelling is back. It is depressing. What is more depressing is my primary and rheumatologist are dismissing those results. They are not the ones living in pain. If there is a connection or possible treatment with Paxlovid they should look into it further.

Jump to this post

Doctors are useless, when it comes to listening and just maybe hearing what we have to say.
I have been fighting this for 3 years now. I have nausea, constipation, swelling, stiffness,
pain, focus, restless legs, shooting pain like arrows or large hypodermic needles sticking in me.
I also have soreness, sometimes eye issues and constant Gastric pains, no sleep and so TIRED.
My hearing has become worse and have not much interest in living. It is a constant struggle,
don't know if the Covid is killing me or the shots. I have not been me, in 3 years now. They write you off as , " it must be in her head." Wrong, it is everywhere. At least you know you are not alone. I have had Covid, Shingles, Flu over the last 4 months. Nothing has helped me. Meloxicam is like a baby aspirin. Doesn't matter, it is not them!

D

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annewoodmayo | @annewoodmayo | Mar 22 7:45am
In reply to @nikhop "Yes I have Celiacs, Mixed Connective Tissue Disease, Raynaud’s, Hashimoto’s, CVID (I get IVIG every 3..." + (show)
@nikhop

Yes I have Celiacs, Mixed Connective Tissue Disease, Raynaud’s, Hashimoto’s, CVID (I get IVIG every 3 weeks), and sever chronic pain/pelvic pain. Pain I am soooo familiar with. I also experienced the same exact thing. The craziest thing I’ve ever experienced. My head is clear, I feel better and I have almost no pain at all. Praying it will stay that way. I sure wish I knew the answer. For something I was so afraid of and told to stay home stay safe, your immune system isn’t good, I can say thank you covid for the Plaxlovid, lol. God bless you on your pursuit and I think I will be digging into this as well. Hope you will update if you find the answer. God bless you and big hugs🤗

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Hi nikhop,
Thanks for the hugs and blessings! They have spurred me into action--well, at least writing this post...
I haven't been able to do much lately...

If you-- or anyone else reading this-- find anything with your digging, please post it here.

Everyone who has this experience with Paxlovid should contact Pfizer. Someone posted it already on this thread long ago. (Can somebody who has their contact info repost it here? I am too tired...)

An acquaintance suggested that we track down the names of sceintists who are researching Paxlovid -- look at names on published papers and their affiliated institutions. And tyr to contact them and get their interest. I can't do any more myself now, just not well enough.

Thanks,
Anne Wood

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j77 | @j77 | Mar 22 11:44pm

This is very interesting.I definitely believe the Paxlovid helped with all of your autoimmune issues.I believe I have long covid even though the specialists I have met with can't figure it out.I have so many unusual symptoms.I also think Epstein Barr virus is very involved in long covid.Before I was diagnosed with Hashimito's disease years ago all they could find was high epstein barr titters and before I became ill with what I believe is long covid my Epstein barr titters are sky high as well.It is reactivated when your body gets stressed by infection,virus or extreme stress.One of my symptoms is barely being able to walk.We have Lupus in the Family,but the Rhuematologists are saying it is not even with positive ANA's and a high speckled pattern.I believe it was set off by covid.I heard long covid clinics are experimenting with Paxlovid.

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sarahb2 | @sarahb2 | Mar 23 10:13pm
In reply to @val64 "One more thought. Paxlovid includes two drugs: nirmatrelvir, which actually inhibits Covid, and ritonavir, which was..." + (show)
@val64

One more thought. Paxlovid includes two drugs: nirmatrelvir, which actually inhibits Covid, and ritonavir, which was designed against HIV, but is included in Paxlovid because it inhibits a liver enzyme that breaks down other drugs, including nirmatrelvir. You don't know whether the apparent effect on your symptoms requires both drugs or whether ritonavir alone might have the same effect. If it's not currently possible to try Paxlovid, it might be worth asking a Dr. to prescribe ritonavir alone. That is almost certainly legal, and is probably even reasonably priced.

One reason Paxlovid could have helped you would be if the ritonavir increased the level of some other drug that you're taking. The doctors probably wouldn't be thrilled if this is what's going on. But if it is, it would be nice to know. Or it could be that there is some naturally occurring compound whose metabolism is affected by ritonavir, and that is what is improving your symptoms.

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What an interesting idea to try ritonavir alone. I'm going to ask my doctor about this. Have you heard of anyone trying it?

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sarahb2 | @sarahb2 | Mar 23 10:31pm

I, too, experienced a glorious week and a half improvement of symptoms from taking paxlovid. I haven't found a doctor willing to prescribe it again. Currently down a rabbit hole of what other anti-virals might work. Looking at the Lerner Protocol (valtrex or famvir) that showed 79 of 106 Group A chronic fatigue syndrome patients with herpesvirus infection returned to normal or near-normal life: "Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome" (this site won't let me post links)

There's also this study from Dr. Pridgen's company using famvir and celebrex together: "A famciclovir + celecoxib combination treatment is safe and efficacious in the treatment of fibromyalgia." It says fibromyalgia but his company is using this combo for all sorts of diseases, including long covid and Alzheimer's.

From their website: "Overactive immune response related to activation of tissue resident herpesvirus has been postulated to be a potential root cause of chronic illnesses such as FM, irritable bowel syndrome, LC, chronic fatigue syndrome and functional somatic syndrome, all of which are characterized by a waxing and waning manifestation of disease, often triggered by events which compromise the immune system."

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1 reply
ava072 | @ava072 | Mar 24 8:59am

Yes!!!!!!!!!! I know I’m late but so glad to see someone else had these results . It was amazing. I’ve been suffering more than half my life with RA and a slew of spine surgeries and was flabbergasted by how much relief i got!!

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ericy210 | @ericy210 | Mar 24 6:02pm

Yes. I had long Coolidge neurological/memory/processing issues for 20 months. Caught Covid again and took paxlovid. Over those few days I returned to close to my pre-Covid self. There are clinical studies (I’m part of a couple) that are testing paxlovid for long Covid, including up to 25 days.

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1 reply
gracevu | @gracevu | Mar 25 5:38am
In reply to @sarahb2 "I, too, experienced a glorious week and a half improvement of symptoms from taking paxlovid. I..." + (show)
@sarahb2

I, too, experienced a glorious week and a half improvement of symptoms from taking paxlovid. I haven't found a doctor willing to prescribe it again. Currently down a rabbit hole of what other anti-virals might work. Looking at the Lerner Protocol (valtrex or famvir) that showed 79 of 106 Group A chronic fatigue syndrome patients with herpesvirus infection returned to normal or near-normal life: "Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome" (this site won't let me post links)

There's also this study from Dr. Pridgen's company using famvir and celebrex together: "A famciclovir + celecoxib combination treatment is safe and efficacious in the treatment of fibromyalgia." It says fibromyalgia but his company is using this combo for all sorts of diseases, including long covid and Alzheimer's.

From their website: "Overactive immune response related to activation of tissue resident herpesvirus has been postulated to be a potential root cause of chronic illnesses such as FM, irritable bowel syndrome, LC, chronic fatigue syndrome and functional somatic syndrome, all of which are characterized by a waxing and waning manifestation of disease, often triggered by events which compromise the immune system."

Jump to this post

Hi, thank you for sharing your experience. I have been experiencing so many symptoms since Nov 2022. One of my symptoms came back like sweating. I sweat on my head, and my back and it makes me such tired.

What should I take, and which doctor should I see?

REPLY
1 reply
jessmoriarty23 | @jessmoriarty23 | Mar 25 10:41am
In reply to @ericy210 "Yes. I had long Coolidge neurological/memory/processing issues for 20 months. Caught Covid again and took paxlovid...." + (show)
@ericy210

Yes. I had long Coolidge neurological/memory/processing issues for 20 months. Caught Covid again and took paxlovid. Over those few days I returned to close to my pre-Covid self. There are clinical studies (I’m part of a couple) that are testing paxlovid for long Covid, including up to 25 days.

Jump to this post

Thank you for sharing this information. For the 25 day study what’s the Paxlovid dosage? My son and I have been suffering with LC for 3 years, and hoping to talk with my PCP about this, maybe she will listen.

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sarahb2 | @sarahb2 | Mar 25 4:21pm
In reply to @gracevu "Hi, thank you for sharing your experience. I have been experiencing so many symptoms since Nov..." + (show)
@gracevu

Hi, thank you for sharing your experience. I have been experiencing so many symptoms since Nov 2022. One of my symptoms came back like sweating. I sweat on my head, and my back and it makes me such tired.

What should I take, and which doctor should I see?

Jump to this post

I think everyone has that same question! Maybe try rheumatology? Check out the resources I posted and see if any of that resonates with what you’re experiencing?

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