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.

@kstar077

I have arthritis and taking methotrexate 2.5mg x8 once a week. Prednesone 2.5mg once a day. Folic acid 1mg once a day. And diltiazem 120mg once a day. The pain and swelling in hands has almost all subsided. Recently I was diagnosed with breast cancer. In left breast. It is stage one. I found lump. 12:30 6cm from nipple. 11mm. It did not show up on mammo and only showed up on ultrasound because I pointed out lump so they knew where to search. They could not schedule surgery til into first part of Oct. I am flipped I have to wait so long. The mri says they could not see under axillary area. I am worried it is under my arm too because I had silicon under arm from old implants leaking. Mostly waiting so long for surgery because they do not have or surgeon and plastics guy til then seems crazy and I am worried my cancer is going to spread while waiting. Is it normal to wait so long? I am sick with worry. They also want me to stop the methotrexate for 2 weeks prior to surgery because of infection concerns. Off my meds causes my swelling to return and pain so bad I cannot get out of bed. Also I am worried that cancer can spread under my axillary area into lymph nodes if it hasn't already. I am in california. If I fly to mayo can they do surgery faster?

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There is precedent here. I think most studies/researchers now accept the evidence that an initial virus infection is a cause of many autoimmune illnesses. My doctor is very open to this and thinks that long Covid could be like HIV in that an antiviral may need to be continued for a long time - the way people with HIV often have to continue taking antivirals.
This is from the NIH: (ART stands for antiretroviral therapy)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5091800/
“ A major challenge of ART is that treatment must be continuous to receive benefits and in most cases requires a lifelong commitment.”

I’m trying maraviroc, an HIV medication, and it seems to be helping. I’m trying not to get too hopeful, but my heart rate, resting heart rate, and walking heart rate are all down by 7-12 bpm. I’ve had a longer window of energy each day, and I’ve begun to start tackling projects I haven’t been able to work on in the 2years and 8months of this grand virus. Still nowhere near well, but a little better.

I assume I’m late in finding out about this book - it’s probably been talked about quite a bit since it came out in 2022 - but it helped me think about chronic illness in some new ways. Among other things, she talks a lot about the viral causes of autoimmune disorders. The book is The Invisible Kingdom” by Meghan O’Rourk

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This is vey interesting. I was prescribed paxlovid for Covid. I woke up this morning after day 3 of taking this medication and I noticed that I have no joint pain. I am moving with more dexterity for the first time in years! I thought it was crazy, so I looked up side effects. I started to do a little research and found the site. I will give this information to my doctor, but I was wondering if there’s other people out there the same results

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@jm69

Good morning,

I messaged my neurologist and told her what I am experiencing. I asked her which medication in the Paxlovid would be able to treat my PsA symptoms and she replied that she wasn't sure but she has had a couple of patients that got the same results. I have an appointment at the end of the month so I will pursue it further. I have been unsuccessful finding anything online but it seems that one of the medications is for HIV treatment, and the other is some kind of booster for performance of other medications. I will keep looking for answers.

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Hi jm69 !

Have you had any luck getting info/help?

I have not...

Thanks!

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@taragray

Yes I have an undiagnosed autoimmune illness with Fatigue and joint pain that started after I had a bilateral mastectomy and reconstruction surgery. Everyone said it was a result of the cancer treatments and surgeries. I had Covid and took the Paxlovid and for the first time in 18 months I felt like my old self. My fatigue and joint pain were greatly diminished. I told all my Doctors..primary care Dr, Rheumatologist, my oncologist and my plastic surgeon. They were not able to draw any conclusions. I contracted Covid again about a month ago and had the same results while taking the Paxlovid. I have been trying to research why it mitigated my joint pain and fatigue. . I’m not sure of the mechanism in my situation, however, it makes me wonder if this antiviral medication which is designed to decrease the viral replication/load, therefore also would then decrease inflammation due to said lesser viral load and provocation, as C-19 causes immune response inflammation.

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Hi taragray !

Do you have any update? I haven't gotten anything new to add.

Thanks!

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@char820

Hi, I had the same experience!! Because I was sick with covid I could not receive my biologic infusion for my rheumatoid arthritis. Typically when this happens my left knee will flare up, fill with so much fluid i have difficulty waking. Since taking Paxlovid my symptoms have improved. While waiting for my infusion I’m typically miserable, but I canceled my appointment to be drained because the fluid went down on its own, which is a miracle to me!

I will be bringing this up to my rheumatologist but something tells me they don’t want to hear it bc the make money off of us and our need for the biologic.

Thanks for sharing your experience because I thought I was losing it!!

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Hi char829 !

Do you have any news on this topic?
Unfortunately, I do not...

Thanks!

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@corlop

This is vey interesting. I was prescribed paxlovid for Covid. I woke up this morning after day 3 of taking this medication and I noticed that I have no joint pain. I am moving with more dexterity for the first time in years! I thought it was crazy, so I looked up side effects. I started to do a little research and found the site. I will give this information to my doctor, but I was wondering if there’s other people out there the same results

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Hi corlop !

Can you see the posts made previously by the other people here on Mayo Clinic Connect?
🙂

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@anned22

There is precedent here. I think most studies/researchers now accept the evidence that an initial virus infection is a cause of many autoimmune illnesses. My doctor is very open to this and thinks that long Covid could be like HIV in that an antiviral may need to be continued for a long time - the way people with HIV often have to continue taking antivirals.
This is from the NIH: (ART stands for antiretroviral therapy)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5091800/
“ A major challenge of ART is that treatment must be continuous to receive benefits and in most cases requires a lifelong commitment.”

I’m trying maraviroc, an HIV medication, and it seems to be helping. I’m trying not to get too hopeful, but my heart rate, resting heart rate, and walking heart rate are all down by 7-12 bpm. I’ve had a longer window of energy each day, and I’ve begun to start tackling projects I haven’t been able to work on in the 2years and 8months of this grand virus. Still nowhere near well, but a little better.

I assume I’m late in finding out about this book - it’s probably been talked about quite a bit since it came out in 2022 - but it helped me think about chronic illness in some new ways. Among other things, she talks a lot about the viral causes of autoimmune disorders. The book is The Invisible Kingdom” by Meghan O’Rourk

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Hi anned22 ,

Did you have a diagnosed autoimmune disease before Covid?

What kind of doctor is prescribing you the antiviral medicine? PCP, or rheumatologist, or other?

Hope you are doing okay. Thanks!

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@annewoodmayo

Hi anned22 ,

Did you have a diagnosed autoimmune disease before Covid?

What kind of doctor is prescribing you the antiviral medicine? PCP, or rheumatologist, or other?

Hope you are doing okay. Thanks!

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Hi fellow Anne,
I did not have a diagnosed autoimmune disease before Covid, but my doctor thinks I have one now thanks to this lovely virus.
But, the drug I’m taking is starting to work, today I had about 3 hours of feeling normal, with normal energy. My heart rates are significantly better. My avg heart rate and my walking heart rate have both gone down by about 10 beats per minute, and my resting heart rate is down by 6.
I’m still trying not to get my hopes up too much, and just be happy during those moments when I feel better.
I found out about this research when I saw Bruce Patterson, the primary researcher, online at a Covid conference. What he said made sense to me physiologically, so I finally went to this site and ordered the cytokine and spike protein tests. They’re expensive - that’s why I waited for about 5 months before I just decided to take a chance (there are some insurance codes that may work for some reimbursement).
Anyway, 72% of my lab results were abnormal. It was incredible to finally see what was causing my problems.
You have to have your own doctor working with you. The clinic only consults, they do not prescribe medication. My primary care doctor is all on board - he’s very interested in figuring out how to help his LC patients.
The drug I’m taking, maraviroc, was developed for HIV and it attacks the Covid debris (the spike protein) that’s causing all my inflammation.
I did some research ahead of time and read an article that looked at the pros and cons of Dr Patterson’s (Dr P was the head of Stanford Medical Center’s virology department) research. It criticizes Patterson’s grandstanding, but also says that P’s studies validate that the drug I’m on shows the most promise for people like me - those with extreme fatigue and dysautonomia. I’ve been on it since July first - and I finally seem to be improving. 🤞
Here’s the link if you’re interested:
https://www.covidlonghaulers.com/north-america/home
Let me know if you have other questions. I hope you find something that helps.

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@anned22

Hi fellow Anne,
I did not have a diagnosed autoimmune disease before Covid, but my doctor thinks I have one now thanks to this lovely virus.
But, the drug I’m taking is starting to work, today I had about 3 hours of feeling normal, with normal energy. My heart rates are significantly better. My avg heart rate and my walking heart rate have both gone down by about 10 beats per minute, and my resting heart rate is down by 6.
I’m still trying not to get my hopes up too much, and just be happy during those moments when I feel better.
I found out about this research when I saw Bruce Patterson, the primary researcher, online at a Covid conference. What he said made sense to me physiologically, so I finally went to this site and ordered the cytokine and spike protein tests. They’re expensive - that’s why I waited for about 5 months before I just decided to take a chance (there are some insurance codes that may work for some reimbursement).
Anyway, 72% of my lab results were abnormal. It was incredible to finally see what was causing my problems.
You have to have your own doctor working with you. The clinic only consults, they do not prescribe medication. My primary care doctor is all on board - he’s very interested in figuring out how to help his LC patients.
The drug I’m taking, maraviroc, was developed for HIV and it attacks the Covid debris (the spike protein) that’s causing all my inflammation.
I did some research ahead of time and read an article that looked at the pros and cons of Dr Patterson’s (Dr P was the head of Stanford Medical Center’s virology department) research. It criticizes Patterson’s grandstanding, but also says that P’s studies validate that the drug I’m on shows the most promise for people like me - those with extreme fatigue and dysautonomia. I’ve been on it since July first - and I finally seem to be improving. 🤞
Here’s the link if you’re interested:
https://www.covidlonghaulers.com/north-america/home
Let me know if you have other questions. I hope you find something that helps.

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Thank you so much for sharing, please keep us posted!

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