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 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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@lbyrd02

Just the opposite! Either the vaccines, or Paxlovid introduced me to one hellish autoimmune condition. All I can say is stay away from any medicine associated with Covid until they flush out all the autoimmune complications. Vaccinations use to be cultured virus injected in small amounts to initiate the immune response to fight the virus. Covid, I believe, is the first attempt to fool the immune system with spike protein to fight Covid. Well like the old saying goes -"You can't fool mother nature" and in the case of Covid - tens of millions are suffering the consequences with hyper active immune systems attacking their bodies.

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HI Ibyrd!
Thanks for adding your experience.
I had Covid twice. The first time, there were no meds available. The second time, I took Paxlovid, and it really, really helped me.

The science is so new; I guess we all need to make our best judgement about treatment in consultation with our doctors and considering any pre-existing conditions.

I was diagnosed with an autoimmune disease long before Covid. It really can be awful-- my sympathy to you!

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@jm69

I tested positive on Wednesday and my Rheumatologist prescribed me Paxlovid the same day. She told me to go off my Methotextrate for at least a week and I was panicking, 2 weeks total without it would put me struggling to walk without pain. It's been 9 days since my last Methotextrate and day 4 of the Paxlovid and my joints feel better than they have in "literally" 5 years. I woke up this morning and realized that my whole body didn't ache. I plan on contacting my doctor tomorrow to ask why this medication has helped so much. I'm glad to see it is not just me.

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HI, Jm69!

What did your doctor say?
Since my experience with Paxlovid is so very, very similar to yours, I would love to know what your doc is thinking.

I hope your doc listened and I hope it's good news!

Thanks for contributing to this conversation!!

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@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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Hi Kstar,
Wow, I'm sorry to hear about your situation...

I think you might get more help if you post your message in the Women's Health area of Mayo. I think this group of messages may not have a lot of similar patients in it. If you post your question in Women's Health or Cancer section, more patients will see it.

Wishing you good/hope/answers/support!

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Please put me in woman's health and breast cancer section

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@annewoodmayo

HI Ibyrd!
Thanks for adding your experience.
I had Covid twice. The first time, there were no meds available. The second time, I took Paxlovid, and it really, really helped me.

The science is so new; I guess we all need to make our best judgement about treatment in consultation with our doctors and considering any pre-existing conditions.

I was diagnosed with an autoimmune disease long before Covid. It really can be awful-- my sympathy to you!

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I also took Paxlovid when Covid 19 was confirmed. It may have helped or not as they blamed the long period of positive test results - 28 days on Paxlovid (Paxlovid Rebound) so beneficial or not - I'm not sure. What I do know is my right hip, right arm and right foot was experiencing pain on day 3 of the virus and within two weeks I felt like I had full body sciatica with my right hip hurting the most but both hips and both arms were now involved with all of the other LC symptom's.
After 14 months of "Wait, it will get better and a few X-Rays, my primary physician might actually believe me and I will have my first MRI to confirm and or dismiss Transverse Myelitis - an Autoimmune Dease that could be triggered by the Covid virus or some other autoimmune condition doctors don't really understand.

All I'm saying is - I would be skeptical of any of the vaccines, booster or medicines that were rushed to the public prior to sufficient testing and approval for covid.

As you noted NIH is starting a study on Paxlovid along with hundreds of other
studies on long covid. They are recruiting participants now - I would wait and see the results before moving forward as a treatment.

What I would do is push the medical industry for more proactive investigation on people that exhibit autoimmune symptoms. After all the vaccines were human's attempt at fooling the autoimmune system in fighting covid - now we might have hyperactive immune systems fighting our bodies. Could we have a potential "Human Error" - I would say better than a 50 - 50 chance.

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@lbyrd02

Just the opposite! Either the vaccines, or Paxlovid introduced me to one hellish autoimmune condition. All I can say is stay away from any medicine associated with Covid until they flush out all the autoimmune complications. Vaccinations use to be cultured virus injected in small amounts to initiate the immune response to fight the virus. Covid, I believe, is the first attempt to fool the immune system with spike protein to fight Covid. Well like the old saying goes -"You can't fool mother nature" and in the case of Covid - tens of millions are suffering the consequences with hyper active immune systems attacking their bodies.

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Exactly! Do not take Paxlovid or any drug that has not been studied for a decade … no one knows the effects of these and NO ONE cares about your health but you! We are Guinea pigs and no one is even paying attention or tracking side effects of medicines. Don’t be duped … it’s all about big pharma making more money. If you get sick from it… they don’t mind, you will come back to the well for more drugs. GOD BLESS AMERICA

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@annewoodmayo

HI, Jm69!

What did your doctor say?
Since my experience with Paxlovid is so very, very similar to yours, I would love to know what your doc is thinking.

I hope your doc listened and I hope it's good news!

Thanks for contributing to this conversation!!

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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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@kstar077

Please put me in woman's health and breast cancer section

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HI kstar,
I'm sorry but I don't know how to move your post.
Maybe you could ask the IT "help" people?
Or retype your post?

Wishing peace to you (and everyone here).

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@kstar077

Please put me in woman's health and breast cancer section

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Hi @kstar077, for instructions on how to follow or unfollow support groups you wish to be in, go to the Help Center.
1. Go to Help Center https://connect.mayoclinic.org/help-center/
2. Select “How to follow a Support Group(s).

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