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.

@annewoodmayo

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!

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Hi- So sorry for the delay; I’ve been taking time off from forums. I’m currently participating in the NIH-funded RECOVER-VITAL trial. But the focus is on Paxlovid on treatment for Long COVID symptoms. There are three separate “arms”: Dysautonomia (POTS), post-exertion malaise and brain fog (I think…don’t quote me on that. I’m in the POTS trial).

So the focus isn’t on inflammatory conditions unfortunately. In my initial visit though, they did collect information on my underlying conditions, which includes an inflammatory arthritis. I got the feeling there are other patients in the trial who also have inflammatory conditions, so they may have the data if someone wanted to explore it… That could take a long time though, doesn’t feel promising unfortunately =\.

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It’s a theory that viruses like EBV can be a cause for autoimmune diseases and something like 90 percent of the population has had EBV which remains latent. It’s possible that paxlovid might help. I was taking oregano oil and black seed oil after my last bout of covid and it seemed to help reduce overall symptoms. They have antiviral properties as well.

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YES! I have undifferentiated connective tissue disease that was diagnosed in November 2016. I have had COVID-19 four times including “Covid Classic” and have had all vaccinations and boosters annually. I do not hold the antibodies for COVID-19. In the times I have taken Paxlovid, I had experienced different strains of the virus and potencies. With Omnicron and a later strain, it lessened my symptoms greatly and I was able to rebound quicker. However, I just took last week due to the most recent strain sweeping through. By day three, I was feeling fantastic. No joint pain, body aches, fatigue, and brain fog that affect me on a daily basis. For the first time in a long time, I felt normal. By the time the Paxlovid wore off on day seven, all of those chronic symptoms returned. I’ve been searching how to replicate that feeling on Paxlovid ever since. For the first time, I felt that the antivirals were staving off my body attacking itself. It was like a break in war and such a relief.

Thank you for your post! I hope we can find something that works like that for us.

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Get a different doctor.
It has taken me four years to get the right team.
Stanford did a study on longterm Paxlovid for Long Covid so it is safe to take for longer than 5 days.
https://med.stanford.edu/news/all-news/2024/06/paxlovid-covid.html
I am making an appointment with Infectious Disease Dept to get someone to look at a long course of Paxlovid for Long Covid.
I also have autoimmune and Rituximab IV is the way to go for my diagnosis, Antisynthetase, Sjogrens and Dermatomyocitis. It was Mayo Rheum who recommended Retuximab, get an appt at Mayo Rehematology today.

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Recently contraced covid - took 5 days of paxlovid about 5 days post symptoms. WOW.
Had amazing levels of energy, clarity and it pretty much erased the increased lower back pain, joint pain and sinus headache pain. I did "feel like my old self"

This lasted only about a day after the course. things now back to the "new normal" except that lower back joint pain is better.

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YES. I’ve had long Covid for almost 3 years. I got it a second time in December 2023. This time I got paxlovid. After taking it, I felt better than I ever did since my first case of Covid. It wore off and I feel like crap now.

I’ve been part of the NIH RECOVER study through University of Illinois for 2.5 years. I also joined the Northwestern University’s long Covid program. I’ve been tested and studied in every way. 80 appointments in the past 12 months. The best neurologists, pulmonologists, cardiologists, etc. they actually pay me to get clinical data to initially define Covid as a disease, classify different symptom issues, etc.

Next week I start as a Guinea pig for testing paxlovid for 15 and 30 days. I may get a placebo. Who knows. Data is collected from different universities and medical institutions. The FDA needs clinical evidence to authorize doctors to prescribe paxlovid for long covid and for more than five days.

Here’s the study design from the NIH database
https://clinicaltrials.gov/study/NCT05965726?intr=Paxlovid&rank=7

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YES, arthritis symptoms pretty disappeared after 1 day on Paxlovid! Pain free for first time in 7 years. I dread coming to end of my prescription and return of symptoms

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Yes!! I’m hoping this leads to something as well. My autoimmune diagnosis came in 2021 after contracting the virus and having the vaccines. First diagnosed with Lupus then told not Lupus then just no solid diagnosis. Aches, muscle soreness, joint issues, daily fatigue…all felt so much better as I was being treated with Paxlovid for Covid in 2024. It had been years since I felt like that. By day two of the treatment I felt better WITH Covid + Paxlovid then I was virus free. I hope researchers are paying attention.

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@nazworth

Yes!! I’m hoping this leads to something as well. My autoimmune diagnosis came in 2021 after contracting the virus and having the vaccines. First diagnosed with Lupus then told not Lupus then just no solid diagnosis. Aches, muscle soreness, joint issues, daily fatigue…all felt so much better as I was being treated with Paxlovid for Covid in 2024. It had been years since I felt like that. By day two of the treatment I felt better WITH Covid + Paxlovid then I was virus free. I hope researchers are paying attention.

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The same thing happened to me after being on Paxlovid. I only took the drug for 3 days. The constant pain in my left knee went away for 30 days. I have an appointment with my Rheumatologist next week and have emailed him what had happened and asked if this is a game changer. He did not respond via email so hopefully we will discuss next week. I'll keep you posted if I get any kind of response.

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I know your post is over a year old, but this was my experience recently with Paxlovid as well.

I first had Covid in October of 2023. I took a course of Paxlovid, and all of my debilitating muscle/joint stiffness disappeared. I thought I was imagining it, but I recently had Covid again in July, 2024. I took a course of Paxlovid, and around the 2.5 day mark of the dose, I noticed the same thing--I was able to get down/up from the floor easily, I had no stiffness standing up from sitting, my pain was gone. I was able to jump over things, stretch, bend. I've been dealing with disabling amounts of stiffness/pain for over 25 years.

My doctor also hadn't heard this, but I wanted it charted/in my chart for future reference. My hopes are that as more people talk about this, someone makes the connection and is able to help the autoimmune community with a new protocol/treatment.

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