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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!

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annewoodmayo | @annewoodmayo | May 13 12:51pm

If anyone gets information from their doctor, please post it here. We need to know...Thank you in advance.

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diverdown1 | @diverdown1 | May 14 9:01am
In reply to @lindalee126 "I found that after 3 days taking Plaxlovid I was pain free from my severe arthritis...." + (show)
@lindalee126

I found that after 3 days taking Plaxlovid I was pain free from my severe arthritis. I understand that we shouldn’t take Plaxlovid for a long time period because it will mess with our kidneys. But… pain free! My doctor put me on Valacyclovir 1 GM tablets and did not help. With a lot of people getting relief from pain, I find it hard to believe there is not a study out there to help the RA community. I am also on infusion that barely helps with the pain. I had Epstein-Barr. I know that we carry the virus in our systems dormant. Please help.

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I never knew I had EBV. I do not remember ever being sick. When I first got sick with Long COVID, EBV showed up in my blood work as reactivated. I have read about so many people who have had the same experience. I have been sick for almost 3 years with Long COVID. I am convinced that it is all due to inflammation and that the virus mimics many other autoimmune diseases. How do we get rid of the inflammation? That, I believe is the key, not only to Long COVID, but many other autoimmune disorders. I know that I am really sensitive to salt now. It makes me feel terrible and also sugar. I watched a video on adrenal fatigue. It is very informative and I could relate to it. I will post it here. I believe that all this stuff is connected.
https://youtu.be/ViBCHO6FSiI?si=E8Ag01Q-Rrot9K9S

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1 reply
gregorb | @gregorb | May 15 6:19pm
In reply to @diverdown1 "I never knew I had EBV. I do not remember ever being sick. When I first..." + (show)
@diverdown1

I never knew I had EBV. I do not remember ever being sick. When I first got sick with Long COVID, EBV showed up in my blood work as reactivated. I have read about so many people who have had the same experience. I have been sick for almost 3 years with Long COVID. I am convinced that it is all due to inflammation and that the virus mimics many other autoimmune diseases. How do we get rid of the inflammation? That, I believe is the key, not only to Long COVID, but many other autoimmune disorders. I know that I am really sensitive to salt now. It makes me feel terrible and also sugar. I watched a video on adrenal fatigue. It is very informative and I could relate to it. I will post it here. I believe that all this stuff is connected.
https://youtu.be/ViBCHO6FSiI?si=E8Ag01Q-Rrot9K9S

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Totally agree. Inflammation is the key to them all. Gald to hear positives for some people using Paxlovid. It completely ruined my life. But that's my story. Know it also saved lives and helped others like yourself. I happened to get a 25% chance covid rebound case. Had twice in 10 days and surely caused my Long covid. Knew what a 25% chance meant in my case. No forgiving myself. At least my infected friends didn't get it too. Believe Inflammation holds the key.

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1 reply
luvrofthelord | @luvrofthelord | May 17 11:36am

My infectious diseases specialist ordered Paxlovid for me a few weeks ago and when I went to pick it up it was going to be $700.00 for a five day course. I couldn't afford to pick it up so no Paxlovid for me.

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holyhannah | @holyhannah | 5 days ago

Why was it $700? Was it covered by insurance? Was it denied by insurance? What was the reason for denial?

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amwood | @amwood | 5 days ago
In reply to @gregorb "Totally agree. Inflammation is the key to them all. Gald to hear positives for some people..." + (show)
@gregorb

Totally agree. Inflammation is the key to them all. Gald to hear positives for some people using Paxlovid. It completely ruined my life. But that's my story. Know it also saved lives and helped others like yourself. I happened to get a 25% chance covid rebound case. Had twice in 10 days and surely caused my Long covid. Knew what a 25% chance meant in my case. No forgiving myself. At least my infected friends didn't get it too. Believe Inflammation holds the key.

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Same story here. Got Covid in late September 2023 and took paxlovid to help me feel good enough to run the Chicago marathon I had been training for all summer. After taking it I still didn’t feel well enough to run the race and then got rebound Covid and then have had long Covid ever since…

Joined this group to see how others are coping with their symptoms.

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1 reply
gregorb | @gregorb | 5 days ago

Those three horrible words. Inflammation. Paxlovid and rebound. Sorry to hear your story too. Believe avoiding stress is the key to mitigate and cope with symptoms. Stress has cost me so many setbacks. Still trying to learn the best ways to avoid. Best wishes and good luck to us all.

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sslariz | @sslariz | 5 days ago
In reply to @corlop "This is vey interesting. I was prescribed paxlovid for Covid. I woke up this morning after..." + (show)
@corlop

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

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same. but I can't find a dr to prescribe paxlovid to me.
I got amazing results after 2 days using it.
all my old energy back, pain reduced by 90% - sleep was wonderful.
This lasted for about a month, then for about two months I still had improvement that gradually lessened by 3 months I was back to "new normal" joint pains, headaches, etc.

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sslariz | @sslariz | 5 days ago
In reply to @annewoodmayo "Hi Alette3939, wow! None of my docs will prescribe Paxlovid for me, now that I don't..." + (show)
@annewoodmayo

Hi Alette3939,

wow! None of my docs will prescribe Paxlovid for me, now that I don't have Covid. I am thrilled for you!

How did you contact the NIH?

Thanks very much for responding. When Paxlovid made me feel better, I thought maybe I was crazy -- since that's how doctors made me feel for years about my autoimmune disease. It's good to know that others have had a similar result for a similar problem.

I started this thread in hopes of getting an idea of how many people have been helped by Paxlovid for auto immune diseases. Now that I know that there are other people, I don't know what to do with the information.

Another person who responded suggested that we contact the manufacturer, which I did. I emailed Pfizer. There is a contact email address on their website.

Thank you!

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You are so luck. I'm going to mayo phx but they do not have any LC docs available for primary care. I am going to a psychiatrists who specializes in LC because that is all I could get.
He wont prescribe me paxlovid. my primary wont either. when I took it before after 2nd time with covid it was a miracle for at least 2 months.

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katey122 | @katey122 | 5 days ago
In reply to @amwood "Same story here. Got Covid in late September 2023 and took paxlovid to help me feel..." + (show)
@amwood

Same story here. Got Covid in late September 2023 and took paxlovid to help me feel good enough to run the Chicago marathon I had been training for all summer. After taking it I still didn’t feel well enough to run the race and then got rebound Covid and then have had long Covid ever since…

Joined this group to see how others are coping with their symptoms.

Jump to this post

I caught Covid in January 2023. Took Paxlovid. Ended up with rebound Covid and was hospitalized and put on a ventilator 3 weeks.
Now have Long Covid. Terrified of catching Covid again, I don't think I'd take paxlovid again.

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