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!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Yes. I have fibromyalgia and sjogrens and I noticed that while taking paxlovid (5 days for covid) I was pain free.

REPLY

Hi Everyone!
I had noticed Paxlovid helped me tremendously with pain, swelling, PVC’s, allergies, dry eyes, and digestive issues.
I was able to finagle taking it for 6 months. During that time, I started to notice the improvements started to lessen probably around month 4. I had high liver enzymes, and I went from severe constipation to loose stools that created other digestive issues for me.

I found a chronic disease specialist who specializes in CFS/ME, LC, HIV, etc. I recommend searching for doctors who specialize in chronic fatigue syndrome. They’ll be the best to think outside the box.

There is a LOT of literature out there about how viruses trigger autoimmune diseases and especially Covid. Autoimmune diseases are a downstream symptom of an upstream cause. AND I know that treating the upstream cause such as Covid, is the answer!

I too have had positive then negative ANA testing. Then my IgM markers for Sjogrens are high but this doesn’t mean I have it yet. However, I’m heading in that direction…

My LC doc knows Paxlovid really helped me. So she wanted to treat my EBV reactivation, but that didn’t do anything like Paxlovid had done.

TREATMENT THAT WORKS:

Many months later, I’ve actually found that treating my gut has had similar and even better results than Paxlovid! I’m of the mind that it’s killing off the bacteria which are harboring the virus. As well as improving my gut thus helping my immune system.

Covid virus infiltrates and infects bacteria. Also, it’s been shown that people experiencing LC have lower immune systems that cause lower antibodies to Covid, thereby unable to fully remove the virus. Hence, why Paxlovid and antibiotics would help.

I don’t have all the answers here and everyone is different. But for me, when I read these articles:
https://patientresearchcovid19.com/hypothesis-matrix-metalloproteinase-inhibition-with-low-dose-doxycycline-in-long-covid-and-me-cfs-pghj-issue1-may2023/
(Showing doxycycline as a potential treatment)

Then the is article summarizing all that has been learned thus far 2024:
https://www.sciencedirect.com/science/article/pii/S1471491424000285
As well as my experience of taking Rifaximin with various other antibiotics that helped tremendously! Even better than Paxlovid….

I see my issues pointing towards gut dysbiosis, with very probable remaining virus, and poor metabolism affecting all my systems! As my mitochondria and body can not get the energy or nutrients needed to fight this virus and others off if my gut cannot function properly. Most of our immunity is in our gut!

If my gut microbiome can be cleared of all the infected bacteria, then repopulated with beneficial bacteria, and I can improve my digestive processes with digestive enzymes to assist in metabolism, along with taking Rifaximin and other antibiotics, my body will be getting the required nutrients it needs. Thereby improving mitochondrial function and decreasing inflammatory pathways. I’ve found this seems to work!

I’ve found taking combination of antibiotics to be helpful. I took Cipro/Flagyl which made me feel like I was completely normal for 2 weeks then, everything came back. (Gut bacteria grow back fairly quickly)

I tried that combo again, with no real improvements. Fast forward to finally getting Rifaximin, with Flagyl and I felt great again!! But only for a few weeks.

Then tried Rifaximin for 3 weeks straight at 550mg 2x/day. It helped my energy, allergies, PVC’s and eyes. Helped my bm too. But still had bloating.

Tried taking off 2 weeks, but started noticing everything getting worse after about day 8. So went back on it with Flagyl, felt better then worse at day 6 while on meds- pretty sure my body doesn’t like Flagyl.

So I got off of Flagyl and added doxycycline. Felt better with 24-48 hours.

Rifaximin has been used long term for hepatic encephalopathy and doxycycline has also been used long term so both have good safety records for long term use.

For 2 months now following this regimen, I’ve been improving! I had gained full body swelling weight of 40 pounds within 4 months, rapid onset of constant PVC’s (super scary), dizziness, brain fog, and inability to even walk from my bed to couch most days. These symptoms plagued me for 8 months straight until Paxlovid, everything came back again at month 4-5, and for these past 7 months I’ve been off and on various gut antibiotics.

The past 2 months straight I’ve been on Rifaximin and added doxycycline, I’ve lost 26 of the 40 pounds I gained, my pain is gone, my eyes are better, no brain fog, no dizziness, energy is waaay better (not normal but inching up there). I feel like my body is finally getting what it needs!

I’m thinking of taking long term (6 months - a year) of Rifaximin combo with doxycycline. Hopefully this will help “reset” everything? It’s ongoing and other things will be tried I’m sure. But for now this has given me back hope!

Sorry so long I just wanted to share what I’ve been finding as this might benefit others…

REPLY
@repl

Hi Everyone!
I had noticed Paxlovid helped me tremendously with pain, swelling, PVC’s, allergies, dry eyes, and digestive issues.
I was able to finagle taking it for 6 months. During that time, I started to notice the improvements started to lessen probably around month 4. I had high liver enzymes, and I went from severe constipation to loose stools that created other digestive issues for me.

I found a chronic disease specialist who specializes in CFS/ME, LC, HIV, etc. I recommend searching for doctors who specialize in chronic fatigue syndrome. They’ll be the best to think outside the box.

There is a LOT of literature out there about how viruses trigger autoimmune diseases and especially Covid. Autoimmune diseases are a downstream symptom of an upstream cause. AND I know that treating the upstream cause such as Covid, is the answer!

I too have had positive then negative ANA testing. Then my IgM markers for Sjogrens are high but this doesn’t mean I have it yet. However, I’m heading in that direction…

My LC doc knows Paxlovid really helped me. So she wanted to treat my EBV reactivation, but that didn’t do anything like Paxlovid had done.

TREATMENT THAT WORKS:

Many months later, I’ve actually found that treating my gut has had similar and even better results than Paxlovid! I’m of the mind that it’s killing off the bacteria which are harboring the virus. As well as improving my gut thus helping my immune system.

Covid virus infiltrates and infects bacteria. Also, it’s been shown that people experiencing LC have lower immune systems that cause lower antibodies to Covid, thereby unable to fully remove the virus. Hence, why Paxlovid and antibiotics would help.

I don’t have all the answers here and everyone is different. But for me, when I read these articles:
https://patientresearchcovid19.com/hypothesis-matrix-metalloproteinase-inhibition-with-low-dose-doxycycline-in-long-covid-and-me-cfs-pghj-issue1-may2023/
(Showing doxycycline as a potential treatment)

Then the is article summarizing all that has been learned thus far 2024:
https://www.sciencedirect.com/science/article/pii/S1471491424000285
As well as my experience of taking Rifaximin with various other antibiotics that helped tremendously! Even better than Paxlovid….

I see my issues pointing towards gut dysbiosis, with very probable remaining virus, and poor metabolism affecting all my systems! As my mitochondria and body can not get the energy or nutrients needed to fight this virus and others off if my gut cannot function properly. Most of our immunity is in our gut!

If my gut microbiome can be cleared of all the infected bacteria, then repopulated with beneficial bacteria, and I can improve my digestive processes with digestive enzymes to assist in metabolism, along with taking Rifaximin and other antibiotics, my body will be getting the required nutrients it needs. Thereby improving mitochondrial function and decreasing inflammatory pathways. I’ve found this seems to work!

I’ve found taking combination of antibiotics to be helpful. I took Cipro/Flagyl which made me feel like I was completely normal for 2 weeks then, everything came back. (Gut bacteria grow back fairly quickly)

I tried that combo again, with no real improvements. Fast forward to finally getting Rifaximin, with Flagyl and I felt great again!! But only for a few weeks.

Then tried Rifaximin for 3 weeks straight at 550mg 2x/day. It helped my energy, allergies, PVC’s and eyes. Helped my bm too. But still had bloating.

Tried taking off 2 weeks, but started noticing everything getting worse after about day 8. So went back on it with Flagyl, felt better then worse at day 6 while on meds- pretty sure my body doesn’t like Flagyl.

So I got off of Flagyl and added doxycycline. Felt better with 24-48 hours.

Rifaximin has been used long term for hepatic encephalopathy and doxycycline has also been used long term so both have good safety records for long term use.

For 2 months now following this regimen, I’ve been improving! I had gained full body swelling weight of 40 pounds within 4 months, rapid onset of constant PVC’s (super scary), dizziness, brain fog, and inability to even walk from my bed to couch most days. These symptoms plagued me for 8 months straight until Paxlovid, everything came back again at month 4-5, and for these past 7 months I’ve been off and on various gut antibiotics.

The past 2 months straight I’ve been on Rifaximin and added doxycycline, I’ve lost 26 of the 40 pounds I gained, my pain is gone, my eyes are better, no brain fog, no dizziness, energy is waaay better (not normal but inching up there). I feel like my body is finally getting what it needs!

I’m thinking of taking long term (6 months - a year) of Rifaximin combo with doxycycline. Hopefully this will help “reset” everything? It’s ongoing and other things will be tried I’m sure. But for now this has given me back hope!

Sorry so long I just wanted to share what I’ve been finding as this might benefit others…

Jump to this post

Hi repl,
Thanks for your informative post! A lot there to process.

For starters, you mentioned a helpful doctor. What is his/her specialty? I mean, what word would we use to do a search?

Thanks, again!

REPLY
@emo

Do you mean you’re having a flare-up of RA or Long COVID?

Most providers are pretty reluctant to prescribe Paxlovid “off label,” because it’s only indicated for acute COVID within 5 days of showing symptoms, but I suppose if you could find someone willing to prescribe it, then in theory you could? I’ve only heard of a scant few people in the Long COVID support group on Connect that have mentioned being able to obtain Paxlovid again and for a longer course.

I got selected to participate in the NIH Long COVID/Paxlovid clinical trial and honestly one of the reasons I checked to see if I could qualify is because I felt great on Paxlovid and am curious if it would help my inflammatory arthritis. But I also have a Long COVID diagnosis and of course I might get the placebo…

Jump to this post

Hi emo,

Could you give us an update on the NIH trial?
Do they know about the Paxlovid working on inflammatory disease?

Hope you are doing well. Thanks!

REPLY

Please post here if you have any ideas for actions we can take to get some acknowledgement and help from the medical community.

REPLY
@annewoodmayo

Hi repl,
Thanks for your informative post! A lot there to process.

For starters, you mentioned a helpful doctor. What is his/her specialty? I mean, what word would we use to do a search?

Thanks, again!

Jump to this post

Hi!
I would search for a chronic disease specialist, or chronic fatigue specialist, I found my doctor after reading an article in Nat Geo on long covid whose clinic was mentioned and in my state. I got lucky to get in.

My search was about finding any doctor NOT with a big group, but someone who was private as then I wouldn’t get lost in the bureaucratic mess that comes from seeing those in larger groups.

Personally I’d find an MD who can prescribe meds, or if you’re in a state that recognizes ND’s as able to prescribe, then anyone who specializes in chronic diseases and conditions.

Then I’d read up on which practitioners you’d feel would be a good fit and really listen to you.

I read reviews and bios and website pages to get a sense. Then I call and talk to the front office personnel and see if it’s a good fit.

I called over a dozen places before finding one that fit for me.

Hope this helps!

REPLY
@colldoll24

I have arthritis that hasn’t been diagnosed or should I say I have many diagnoses nothing confirmed as correct. I got Covid in September of 22 and was put on anti viral molnupiravir. The BEST 5 days I have had in 6 years. All of my joint pain disappeared, fatigue went away. I was able to do things I haven’t been able to do for years. It was glorious!!! It stopped when my anti virals ended. Talked to my PCP, rheumatologist, orthopedic surgeon, was sent to a hematologist who was super intrigued and actually asked some of his virology colleagues if they would take my case. They said no. Every doctor has been intrigued but brushes it off as interesting. They throw meds at me all the time to take that “might work” like I am a walking experiment but no one will look into why this happened and if we can make it happen again with an anti viral. Been searching internet, doctors ever since. If there are more of us out there that had the same experience there has to be some doctor willing to help.

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That is exactly how I felt. I came to the internet to look to see why this happened! I have not had that range of movement in my shoulder in 3 years!!

REPLY

Yes, the exact same thing has happened for me. Unfortunately, this is my second round with Covid and I am experiencing the same reaction from Paxlovid. Amazing!

REPLY

Hi, I'm new. I've had osteoarthritis for over 20 years and it has been getting worse. Three joints replaced (hip, both shoulders) due to loss of cartilage. I got Covid last week and my joints all over hurt so bad I could barely walk (think abominable snowman). ONE DOSE of Paxlovid and I no longer hurt. This is like a miracle. I decided to search and see if other OAs had that experience, and it would appear so. Hope there is more progress on this. I'm in my 70s.

REPLY
@mymayo99

Hi, I'm new. I've had osteoarthritis for over 20 years and it has been getting worse. Three joints replaced (hip, both shoulders) due to loss of cartilage. I got Covid last week and my joints all over hurt so bad I could barely walk (think abominable snowman). ONE DOSE of Paxlovid and I no longer hurt. This is like a miracle. I decided to search and see if other OAs had that experience, and it would appear so. Hope there is more progress on this. I'm in my 70s.

Jump to this post

The exact thing happened to me. One dose of Paxlovid and pain from osteoarthritis, rheumatoid arthritis, loss of energy disappeared and my drive to accomplish things returned. I felt at least 15 years younger! The last day I took Paxlovid was the last day l felt normal. I have related my experience to my primary doctor, rheumatologist,cardiologist ,vascular doctor and the pain clinic. Some of the doctors are affiliated with Emory Hospital which is a research and teaching hospital. There has been no interest shown by any medical person. I feel very discouraged. I am 80 years old.

REPLY
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