Did PAXLOVID also relieve your arthritis and autoimmune symptoms?
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!
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There is precedent here. I think most studies/researchers now accept the evidence that an initial virus infection is a cause of many autoimmune illnesses. My doctor is very open to this and thinks that long Covid could be like HIV in that an antiviral may need to be continued for a long time - the way people with HIV often have to continue taking antivirals.
This is from the NIH: (ART stands for antiretroviral therapy)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5091800/
“ A major challenge of ART is that treatment must be continuous to receive benefits and in most cases requires a lifelong commitment.”
I’m trying maraviroc, an HIV medication, and it seems to be helping. I’m trying not to get too hopeful, but my heart rate, resting heart rate, and walking heart rate are all down by 7-12 bpm. I’ve had a longer window of energy each day, and I’ve begun to start tackling projects I haven’t been able to work on in the 2years and 8months of this grand virus. Still nowhere near well, but a little better.
I assume I’m late in finding out about this book - it’s probably been talked about quite a bit since it came out in 2022 - but it helped me think about chronic illness in some new ways. Among other things, she talks a lot about the viral causes of autoimmune disorders. The book is The Invisible Kingdom” by Meghan O’Rourk
This is vey interesting. I was prescribed paxlovid for Covid. I woke up this morning after day 3 of taking this medication and I noticed that I have no joint pain. I am moving with more dexterity for the first time in years! I thought it was crazy, so I looked up side effects. I started to do a little research and found the site. I will give this information to my doctor, but I was wondering if there’s other people out there the same results
Hi jm69 !
Have you had any luck getting info/help?
I have not...
Thanks!
Hi taragray !
Do you have any update? I haven't gotten anything new to add.
Thanks!
Hi char829 !
Do you have any news on this topic?
Unfortunately, I do not...
Thanks!
Hi corlop !
Can you see the posts made previously by the other people here on Mayo Clinic Connect?
🙂
Hi anned22 ,
Did you have a diagnosed autoimmune disease before Covid?
What kind of doctor is prescribing you the antiviral medicine? PCP, or rheumatologist, or other?
Hope you are doing okay. Thanks!
Hi fellow Anne,
I did not have a diagnosed autoimmune disease before Covid, but my doctor thinks I have one now thanks to this lovely virus.
But, the drug I’m taking is starting to work, today I had about 3 hours of feeling normal, with normal energy. My heart rates are significantly better. My avg heart rate and my walking heart rate have both gone down by about 10 beats per minute, and my resting heart rate is down by 6.
I’m still trying not to get my hopes up too much, and just be happy during those moments when I feel better.
I found out about this research when I saw Bruce Patterson, the primary researcher, online at a Covid conference. What he said made sense to me physiologically, so I finally went to this site and ordered the cytokine and spike protein tests. They’re expensive - that’s why I waited for about 5 months before I just decided to take a chance (there are some insurance codes that may work for some reimbursement).
Anyway, 72% of my lab results were abnormal. It was incredible to finally see what was causing my problems.
You have to have your own doctor working with you. The clinic only consults, they do not prescribe medication. My primary care doctor is all on board - he’s very interested in figuring out how to help his LC patients.
The drug I’m taking, maraviroc, was developed for HIV and it attacks the Covid debris (the spike protein) that’s causing all my inflammation.
I did some research ahead of time and read an article that looked at the pros and cons of Dr Patterson’s (Dr P was the head of Stanford Medical Center’s virology department) research. It criticizes Patterson’s grandstanding, but also says that P’s studies validate that the drug I’m on shows the most promise for people like me - those with extreme fatigue and dysautonomia. I’ve been on it since July first - and I finally seem to be improving. 🤞
Here’s the link if you’re interested:
https://www.covidlonghaulers.com/north-america/home
Let me know if you have other questions. I hope you find something that helps.
Thank you so much for sharing, please keep us posted!