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 char829 !

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

Thanks!

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Hi,
So for me, after several days after finishing Paxlovid, unfortunately my joint swelling did return but I have to say not nearly as severe as it has been in the past. When I was finally able to receive my infusion, I brought up this weird little phenomenon to my rheumatologist and he acknowledged what I said but wasn’t very interested.

It will be interesting to se if this ever comes of anything. I’ve had RA for over 20 years and have never had such relief without my treatments. Maybe we need studies with Paxlovid to see if in fact this is a hidden resolution to pain manage my and inflammation.

Best,
Char

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YES! I experienced the same relief from my osteoarthritis pain when I began my course of Paxlovid for a recent case of Covid.
It was wonderful! I hadn’t been pain free in years except for those few days on Paxlovid. I have osteoarthritis just about everywhere. It helped immensely with the Covid symptoms also, while I was taking it. They returned when I finished the 5 day treatment, but not as bad.
I had held off on taking the Medrol prescribed to me, as I don’t like the after effects of prednisone. I did start taking it when Covid symptoms were still bothering me. It caused A LOT of bone pain. My legs, all my joints, neck and shoulders, back, were very painful. Headache also.
Pain slowly improved days after I stopped taking Medrol.
I’ve looked online and can find nothing that explains why Paxlovid would help so much with arthritis pain.
How to get medical profession to research this? Or approve off label use? I read the response about government blocking off label use and reasons. Not good news for arthritis sufferers.
If it helps millions of people with relief of osteoarthritis pain, it should be available by prescription. Many people can’t take NSAIDs or Opioid medications. This would hopefully be a safe alternative for them.

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@la24

YES! I experienced the same relief from my osteoarthritis pain when I began my course of Paxlovid for a recent case of Covid.
It was wonderful! I hadn’t been pain free in years except for those few days on Paxlovid. I have osteoarthritis just about everywhere. It helped immensely with the Covid symptoms also, while I was taking it. They returned when I finished the 5 day treatment, but not as bad.
I had held off on taking the Medrol prescribed to me, as I don’t like the after effects of prednisone. I did start taking it when Covid symptoms were still bothering me. It caused A LOT of bone pain. My legs, all my joints, neck and shoulders, back, were very painful. Headache also.
Pain slowly improved days after I stopped taking Medrol.
I’ve looked online and can find nothing that explains why Paxlovid would help so much with arthritis pain.
How to get medical profession to research this? Or approve off label use? I read the response about government blocking off label use and reasons. Not good news for arthritis sufferers.
If it helps millions of people with relief of osteoarthritis pain, it should be available by prescription. Many people can’t take NSAIDs or Opioid medications. This would hopefully be a safe alternative for them.

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Try LDN ..it has helped my arthritis pain😃

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Oh my god! Yes! I have asymptomatic pulmonary sarcoidosis. It was an incidental finding on a CT scan found in 2016. Biopsy proven. I’m still asymptomatic and my lung function is great. O2 saturation is 100%. Oddly enough, after my second covid vaccine in April of 2021, I started to develop horrific arthritic pain. I’d always had some osteoarthritis in my left knee as I am/was an athlete, but nothing like this. I was being seen at Stanford. Even with joints - large joints - that were blowing up like balloons, I was told that my pain was likely in my head and due to the pandemic. I was never isolated during the pandemic. One thing that I could still do during lockdown was ride my horse. I saw friends masked and at a distance every single day. Months turn into a year. I keep going back. Had imaging that showed inflammation, yet was told that I was just getting old. My primary finally got worried because I was getting nowhere, could barely move and had lost a lot of weight and muscle. My anti CCP was very high. My RA factor was positive. I moved to a different rheumatologist at a different institution. I’m the same as you. Is it RA, AS, MS. We tried prednisone which only made me sick, methotrexate and then Humira. Nothing. Many other less invasive medications prior to these three. My primary prescribed medication for the pain because I was becoming bedridden. I refused to get boosted because of this and just decided to mask indoors and be very careful. I wasn’t doing much of anything anyway due to the pain. I couldn’t. I was lucky if I could walk a little bit. My neighbors came down with covid earlier this year. We are friendly, but don’t spend time together. At most, we will chat outside for a few minutes. I sent them a courtesy text that I had tested positive. That’s when they told me that the whole family had covid. I woke up on a Saturday morning with symptoms. I thought it was a sinus infection and sort of jokingly took a covid test because I am never around people. Positive. I started paxlovid that day after a trip to urgent care. Within 24 hours, my arthritic symptoms were 80% better. I was still exhausted, but I could move without debilitating pain. I could bend. I could walk up the one step into my bathroom without holding the wall. I’m only in my 50s and prior to this, was still competitively jumping my horse. The pain was not gone from resting and sleeping because I could never escape the pain. But I was “almost normal.” Paxlovid prevented me from getting seriously ill, but as soon as my 5 day course of medication was gone, all of my arthritic symptoms returned. I also brought this up with my rheumatologist who shook his head. I’m so sorry that you are in the situation you are in, but I actually got excited to read your story. I’ve been researching and trying to self advocate because no one else seems to care that I’m wasting away and living the life of a hermit. If I was not self employed and working at home in little increments, I would have to apply for disability. I was previously tested for EVERYTHING - Lyme disease, TB, hepatitis - you name it - all negative. I am seeing a therapist and a psychiatrist because I don’t want to live this way. I still don’t have a firm diagnosis. I only know that while I was on paxlovid, my symptoms were SO much better. I don’t know who to see next either. I have spent a lot of time in tears. I’ve also spent a lot of time wondering how much longer I can live this way. I’m now 20 pounds underweight. Not living. Please let me know if you have made any progress. Lisa

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@klittr3637

Try LDN ..it has helped my arthritis pain😃

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What is LDN? Thanks.

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@annewoodmayo

thanks for info about the clinical trials 🙂

You can't participate if you had a disease before Covid. I guess that any other illness confuses their results.

I'm really interested in people whose non-Covid diseases were really helped a lot by the Covid medicine.

Thanks for your input!

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I developed an RA type of disease after my second covid vaccine. Athletic, fit, excellent diet. Boom! Could barely walk. Lost tons of weight. Tried lots of different medications and did not respond. I was actually “blamed” for not tolerating or responding to treatment. I contracted covid earlier this year. Started paxlovid. My systemic arthritic symptoms improved by about 80 percent. Returned quickly after finishing my prescription. There must be a correlation. I’m tired of not living. I was so active. I’m on opioids to barely function. Low dose and I’m careful. It’s better than being bedridden. But I am convinced that a medication like paxlovid is the answer. Best wishes! Lisa

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

What is LDN? Thanks.

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LDN is low dose naltrexone. My primary care physician in NYC called the prescription to Mayo Clinic pharmacy for me. It’s is an opioid antagonist used to treat opioid addictions. It appears to have an anti inflammatory effect when used at 1/10 th of the standard dose . You start at 1.5 mg for two weeks, then 4 mg for 2 weeks then the standard dose is 4.5 mg once daily. One of the mechanisms of long Covid is chronic inflammation. Other mechanism may include micro blood clots. mitochondrial oxidation issues and classic autoimmunity. An immunologist yesterday advised me to consider Paxlovid, aspirin, statin and prednisone 5 mg daily .

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@annewoodmayo

Hi jm69 !

Have you had any luck getting info/help?

I have not...

Thanks!

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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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Had anyone whose autoimmune issues greatly improved while on paxlovid for Covid pursued a clinical trial? This is the first time that I’ve found people in my situation. I didn’t have systemic arthritis before I got vaccinated. I did not have a high CCP or any symptoms. I did not test positive for RA before because I never had symptoms. I could move on paxlovid. I’m willing to go anywhere. Two plus years of my life are gone. Really need someone to share what has helped them. Best to all. Lisa

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@radapanich

LDN is low dose naltrexone. My primary care physician in NYC called the prescription to Mayo Clinic pharmacy for me. It’s is an opioid antagonist used to treat opioid addictions. It appears to have an anti inflammatory effect when used at 1/10 th of the standard dose . You start at 1.5 mg for two weeks, then 4 mg for 2 weeks then the standard dose is 4.5 mg once daily. One of the mechanisms of long Covid is chronic inflammation. Other mechanism may include micro blood clots. mitochondrial oxidation issues and classic autoimmunity. An immunologist yesterday advised me to consider Paxlovid, aspirin, statin and prednisone 5 mg daily .

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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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