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.

I have found the Post Covid 19 Clinic in my area to be the most helpful. First, it was nice to be listened to and not challenged about what I was saying. There was no clinical, no BP, temp, etc. Simply a face to face appointment where the trained nurse practitioner listened to the changes I’ve noticed in my body post Covid. Based on that dialog she referred me to specialists. The first was for a sleep study because I was really struggling with daytime sleepiness. I also woke up every hour or two at night, having no idea what woke me up. I was grateful to be able to fall back to sleep each time. I would get out of bed around 6ish to take ibuprofen for the extreme body aches all over in the morning. The sleep study revealed severe sleep apnea, so my nasal pillow CPAP is my new best friend. The next referral was for chest X-ray, pulmonary function test, and 6 minute walking test. That revealed scarring in the left lobe of my lungs and based on these tests I was diagnosed with restrictive airway disorder causing shortness of breath on slight exertion like walking across a parking lot. I have an appointment today with a pulmonologist. I am hoping he can help me with the cough I have mostly in the mornings. I’ve been waiting a few months for this appointment. My post Covid overactive bladder is controlled well with daily medication. I use an albuterol rescue inhaler as needed for shortness of breath. Prior to getting long Covid I didn’t take any prescription medications. I’m thankful that over a year later, I am finally getting answers to what I’ve been dealing with in my body since July 2022. I found a good rheumatologist who sent me for extensive bloodwork from his office. Based on the results he diagnosed me with early stage rheumatoid arthritis which explains the extreme body aches especially in the morning. I’ve been able to get off ibuprofen. I am currently taking a steroid in the morning with breakfast which is helping to reduce the inflammation in my body.

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@bcborn

I’m trying to be seen at Mayos. Have long covid for 6 months and am going there to get advice. Should I forget about going?
I get frustrated reading all the post, cuz they talk about things I don’t know about..

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If you’ve been accepted by Mayo’s Long Covid Clinic I would definitely go that route. I applied, but was not accepted because I didn’t have a positive PCR test. I used the free government issued Covid home test in June 2022. I did go to USF’s Post Covid Clinic a few months ago after a 6 month wait. The doctor faxed bloodwork needed to my PCP. She also recommended supplements which I purchased and take daily. I have a virtual 6 month follow up next month. But, my local Post Covid Cares Clinic has been the most helpful in getting me into specialists and needed testing.

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Hi I’ve got type one diabetes (23 years) I am slim & try to stay fit but was diagnosed RH 4 years ago. The past two years the flare ups have been awful I’ve been suffering & put on methotrexate & hydroxychloroquine medication, which made my hair fall out. I still had terrible pains in my fingers& joints. I had Covid was given paxlovid & for the first time in 8 months my rings have come off my fingers, they were previously stuck due to the swelling I feel like my RH has vanished I haven’t felt like this for years. I have been told to stop the methotrexate for 3 weeks post covid. I found this post searching the link between paxlovid & Rheumatoid arthritis relief. I’m honestly amazed it’s been 8 days since taking it & honestly feel like my RH has gone 😊

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@annewoodmayo

Hi Jazzho!

Did you tell the surgeon about the Paxlovid? Or your orthopedic doctor? If you did, can you tell us what they said?

Thank you!
Anne

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I saw my pain management doctor today for another problem I have. When I told him about my reduced pain after taking paxlovid he asked if I was taking anything else . I was also taking 500mg of naproxen twice a day. He said the paxlovid may have boosted the effectiveness of the naproxen. I think the ritonavir may have keep the naproxen in my system longer increasing its effectiveness. When I finished my paxlovid, I also stopped the naproxen a few days later, because I don’t like taking such a high dose. About a week later the pain came back.

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I 'm 51 male just tested positive for COVID-19 on Sunday, October 15, and I was given Paxlovid. I have Rheumatoid Arthritis, I take Plaquenil and I was told to stop Plaquenil for 5 days until I finish the Paxlovid dosage. My RA is 98 percent less painful, I feel like it is in remission it is absolutely amazing. Makes me think my RA is a virus. I walk miles on my private land, no food allergies, and I have no fatigue, so far so good. I'm just amazed...

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Suzanneeb,
gr2180,
nayhar1,

Hi, folks!
I'm glad you found this chatboard. There seem to be quite a few people here who have had their autoimmune disease (RA included) symptoms relieved by Paxlovid.

Some of us have contacted the manufacturer (Pfizer) through the email that Pfizer has on its website. We're hoping that Pfizer can do something with our information/experience. Please consider emailing them, too.

Most of us have not been able to get Paxlovid after our initial prescription for the Covid.

If you have any other ideas about how we can promote studies into this topic or promote access to Paxlovid for autoimmune disease treatment, please post them here.

Wouldn't it be great if we all could feel better again?

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Hello,
Yes, my Ankylosing Spondylitis symptoms improved significantly while taking Paxlovid for Covid.

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@ckfoust

Hello,
Yes, my Ankylosing Spondylitis symptoms improved significantly while taking Paxlovid for Covid.

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Hi ckfoust,

Have any of your doctors commented on this result? None of mine have known anything about it.

Do you plan to pursue it? I want to find out if there is a better medication, maybe an antiviral, for my autoimmune symptoms. I am not making any progress alone.

Thanks!

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@annewoodmayo

Hi ckfoust,

Have any of your doctors commented on this result? None of mine have known anything about it.

Do you plan to pursue it? I want to find out if there is a better medication, maybe an antiviral, for my autoimmune symptoms. I am not making any progress alone.

Thanks!

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I shared the information with my family physician today. She was surprised and thought it was intriguing. She said she is also going to do some research on it and look into if we need to do additional testing. I will share with my rheumatologist next month.
I currently take renflexis infusions, plaquenil and methotrexate. The paxlovid made me feel better than the other three.
I will reach out to pfizer and NIH.
Thanks.

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@annewoodmayo

Hi taragray !

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

Thanks!

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I do not have any updates. I am trying to get into a long Covid study, but so far none of my medical team seems to know why the Paxlovid relieved my symptoms. If I get into that study I will let you know if taking the Paxlovid for longer helps.

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