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.

@lisajade4mayo

Thank you! I just messaged my doctors about this finding. Everyone I have seen has sort of thrown their hands up in the air because they don’t know what to do. They are not living it. I understand that they are busy, but I just know in my heart that there has to be a way to minimize symptoms. Getting covid was very scary for me, but I never would have tried paxlovid without covid. It kept me from getting really sick and also almost rid me of my RA like symptoms. I’m trying not to travel because I’m not strong right now, but I’m at the point of doing anything to find answers. I’m not sure if my rheumatologist will even entertain the idea. But I’ve connected with my other doctors. Looks like I need an immunologist??? Best and thanks. Lisa

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Best of luck ! See if any immunologists in your area work with longCovid . Immunologist generally work with patients who have allergies and asthma, the person I saw is involved in long Covid research. Be persistent, ask the doctors if you can email research . Mention Mayo Clinic, Stanford - they hold these institutions in high regard, so they will take your contribution seriously. It’s a collaborative effort . We long haulers are highly motivated to find things that work, doctors have to deal with many different conditions and long Covid is just one of them.

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In reply to @lisajade4mayo "What is LDN? Thanks." + (show)
@lisajade4mayo

What is LDN? Thanks.

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Low dose naltrexone

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Paxlovid is definitely being underused.
I don’t understand doctors not prescribing to people who have had such improvement when taking it.
I managed to get a five day supply online hoping for help with my long Covid symptoms (different from these posters) but it did not help. At least not at the five day course I was able to obtain.
I’m Sixteen months in with this demon and feeling abandoned.

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@jm69

Well, I had a pretty disappointing visit with my neurologist. She wouldn't even acknowledge the fact I was trying to have a conversation with her about my experience. She said to continue with Methotextrate and followup in 3 months. Hoping the report I filed with Pfizer turns into something or my pharmacist is able to get some further information.

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Hi jm69

Sorry about your last neurologist visit...
If it's any consolation, I can't think of my last "good' doctor visit! Well, lots of things are new and tough for them, too, nowadays, I guess.

You inspired me to email Pfizer! Maybe they will do something about it, since a lot of doctors don't know what to make of this unexpected response to Paxlovid.

Let's try to keep this conversation thread on the Daily Digest, eh? Have a good Labor Day!

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I’m amazed that the Paxlovid worked for your autoimmune symptoms. I’m happy for you! I’m wondering if anyone has experienced loss of taste and smell during Covid. I had Covid in December of 2022 and still to this date have not gotten it back. Has anyone done acupuncture for this and if so, did it work? I’m in the process of finding an acupuncturist for this reason. Thanks for your input.

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I have severe pain from back injuries and wear and tear on my body. Also at this second time having covid, my Achilles tendon was in severe pain. I have been joking that covid healed my tendon but I also noticed a huge decrease in pain all over with Paxlovid during my treatment. I actually get muscle relaxer injections twice a week my back is so bad i dud not go in due to my covid for two weeks and it was beeter. My pain all over. Bonus that my lungs did not go crazy and I did great this round. I think your right. A bunch of our pain may be virus based.

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@lkirnbauer

I’m amazed that the Paxlovid worked for your autoimmune symptoms. I’m happy for you! I’m wondering if anyone has experienced loss of taste and smell during Covid. I had Covid in December of 2022 and still to this date have not gotten it back. Has anyone done acupuncture for this and if so, did it work? I’m in the process of finding an acupuncturist for this reason. Thanks for your input.

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Hi lkirnbauer!

You may want to post your questions about acupuncture and loss of taste and smell in the discussion about long covid that is separate from this discussion. You might get more responses there. : )

My tech skills are pretty weak so I can't tell you how to find the other discussion. Sorry about that.

Good luck to you!

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YES!!! OH MY GOSH...YES!
I got Covid and was put on Paxlovid due to my high risk status. I have Lupus, Rheumatoid Arthritis, Diabetes and several other autoimmune. I noticed it most in my left hip/buttock pain. I suffered for over a year. And could barely put any weight on my left leg. I got shots and was even prescribed Oxicodone. Nothing helped. The Paxlovid GREATLY diminished it. I still have other arthritis pain.. and the hip/buttock pain is not completely gone......but OH SO MUCH BETTER. My son found this thread. I was so happy to see it! I'm seeing a New Rheumatologist next month....I will run this by her and see what she says.

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I found this sight after searching, because I got tested positive for covid in late august and took plaxovid . I am 73, and have a painful right knee, and I am getting knee replacement late October. Any way , 4 days after taking plaxovid I noticed my knee pain was practically gone . 6 days later I went for 2 mile walk. The next day went a 20 mile ride on my e-bike. Now after 30 days later my pain is back and I can’t wait to my have surgery. There is no doubt something in plaxovid relieved my pain. I couldn’t find any info except for this posting. Everything I searched only said that Covid can make your joint pain worse in the future.

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YES!!!! While on Paxlovid, I had NO pain or stiffness from arthritis. It was amazing. About 7 days after ending treatment, pain started back slowly and hand stiffness came back

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