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.

arthur57 | @arthur57 | Jan 12 12:06pm

In reply to @donnajones "What r the downsides to Paxlovid? Is it hard on the kidneys?" + (show)

Thats a great question. I have used Plaxovid on 2 occasions, both for covid of course, which all it is currently offered for. I took it for the full 5 day course of treatment but frankly felt like new after onlyt one day on the med, both times.

To your question, however, I did learn that the original paxlovid could cause mild kidney issues in some patients. Since then they do provide a newer, kidney friendly version of the drug which I did receive 2nd time, which was about 4 months ago. I frankly don't know if original version is still available or not. I have had no kidney issues from my taking original dose. Obviously if this drug is ever put through trials for arthritis etc. it would be an altered version of current med, at least I would suspect!

plong1956 | @plong1956 | Jan 12 12:26pm

Last night I wrote to the link mentioned in a prior comment. Because I’m newly registered I’m not allowed to include the link. At any rate, I got a call and email requesting to speak with me. The first representative indicated that there is no trial being done at this time regarding Paxlovid being used for other diagnosis other than Covid, as noted in this discussion.

I was then transferred to a nurse in the area where they note side effects of Paxlovid, including positive unexpected results. I told her about this discussion chain but could not speak for anyone else’s experience but my own.

I do believe it would be helpful if more of you on this discussion write to the at Pfizer.

donnajones | @donnajones | Jan 12 12:34pm

In reply to @arthur57 "Thats a great question. I have used Plaxovid on 2 occasions, both for covid of course,..." + (show)

Do you know the name of the new kidney friendly version? I have stage 3 Renal disease and have to be careful what I take. I know on the Paxlovid they were going to give me a reduced dose which I didn’t take after all . But would love to know the name in case I get infected again this year😊

arthur57 | @arthur57 | Jan 12 2:01pm

In reply to @donnajones "Do you know the name of the new kidney friendly version? I have stage 3 Renal..." + (show)

If you get covid again, and hopefully you won't - just make sure you ask the provider you see (primary/urgent care/whoever) for a script denoting that you need the kidney friendly version. You are indeed someone who definitely needs the newer version. But to answer your question, the name to my knowledge is the same, still Paxlovid. Only reason I know this is because when I got Covid second time just 4 months ago in sept. I went to Urgent Care this time rather than trying to get into my docs office, which is next to impossible, ugh. The PA that I saw asked me if I had any conditions that would warrant the newer (Kidney friendly version) of Paxlovid. When I questioned her I found out they had a newer (kidney friendly) version since a few folks did experience some kidney side effects. I told her I am quite healthy but wanted the new improved version anyway and she sent script for it to CVS. When I picked up my drug I asked them to confirm it was newer version and they did so. Frankly, not sure why older version is still even offered, other than it evidently is not an issue for younger or healthier folks. Best to you!!

annewoodmayo | @annewoodmayo | Jan 12 5:38pm

email:
pfizermedicalinformation@pfizer.com

Pfizer phone # to report side effects (usually bad effects, but also take good)
800-438-1985
If you call that number you need to hit #1 , then stay on the line for person

National institute of Health/ Arthritis division
email address: NIAMSinfo@mail.nih.gov

jillt72 | @jillt72 | Jan 14 10:25am

I found this post because I searched for “Paxlovid relieved joint pain.” I have Sjogren’s and am on hydroxychloroquine twice a day. My doctor also put me on Meloxicam because I have had tendon pain in my right elbow for over a year. I saw her again in December 2023 for a follow up and she referred me to physical therapy because the stretching exercises she had recommended didn’t relieve my pain. I tested positive for Covid on Christmas Day and my doctor prescribed Paxlovid on the 26th. Within a few doses, my elbow pain completely went away. At first we thought it might be because I had to stop Wellbutrin to take Paxlovid, but I haven’t resumed Wellbutrin and after finishing the Paxlovid the elbow pain has gradually returned. Also, on a side note, I experienced no negative side effects from the Paxlovid, while my husband experienced severe diarrhea and a horrible taste in his mouth while he was taking it.

annewoodmayo | @annewoodmayo | Jan 14 11:31am

In reply to @jillt72 "I found this post because I searched for “Paxlovid relieved joint pain.” I have Sjogren’s and..." + (show)

jillt72
Hi!
Many of us here have contacted Pfizer and the NIH (National Institutes of Health) to let them know of the good effects of Paxlovid on our autoimmune symptoms in the hope that the more people who tell them the more likely that some kind of action will be taken to get us access to a good medicine.

Please consider contacting them also. The contact information is on this conversation-- a few posts back.

Thanks!

Horrible taste- me, too. I took a cough drop to get rid of it.
Diarrhea-- I had to take Paxlovid with a full meal, not just a cracker or a snack.
Thanks again

leochihuahuamom | @leochihuahuamom | Jan 14 12:33pm

My dad (who is 73 y/o) had covid for the first time this past Christmas. Started paxlovid and took all of the medication. He just told me the other day that when he was taking it his arthritis/joint pain was almost all gone. Significant reduction. We just asked our chriropractor about it---like what could be in the paxlovid that would do this. She wasn't sure. I just started doing some online research and came across this site.

denisefd | @denisefd | Jan 14 7:06pm

Hi,
I have been diagnosed with gout, then rheumatoid arthritis. They say it’s fibromyalgia. I got Covid. I started paxlovid and as you have expressed all your symptoms went away as well as mine so I’m going to see my doctor on Monday to talk to her about this. Because I’m thinking after many back surgeries that I’ve have septic arthritis. I would stay persistent with your rheumatologist as I am I will follow up with you after my appointment. Sometimes we have to advocate for ourselves, and if we don’t, then we’re just taking drugs that aren’t effective and compromises our immune system along with many other side effects, that come along with all these other drugs that they put on us. I believe Doctors don’t like to be called out or if they are wrong. I thought I was going crazy until I read your story with that now I have the confidence to go into my doctors office and talk to her about this without like I’m going crazy or something . Again, I will reach out to you after I talk to my doctor and give you an update of what she would. I wish you the best but stay persistent with your doctor. I’d feel so good on this paxlovid it is have been three years since I have felt decent like I could go out and want to hang out with my friends and have a conversation and without worrying about being in pain. So it is my mission to find out you are not crazy my friend hang in there we will work out this together.

blaman5 | @blaman5 | Jan 20 10:02am

In reply to @emo "I’m sorry it was so frustrating. And must be even more frustrating experiencing an improvement on..." + (show)

@emo

I’m sorry it was so frustrating. And must be even more frustrating experiencing an improvement on a temporary medication and to not know why

My symptoms did not improve on Paxlovid. Covid exacerbated my symptoms eventually, after the virus cleared. Paxlovid did as intended and I recovered from the acute infection more quickly and wasn’t hospitalized.

I think it’s understandable your rheumatologist may not know what to make of your observation. I don’t know what treatment you’re on, but I wonder what action could they take based on knowing your symptoms improved on Paxlovid that could be drastically different than what you’re already doing?

The general approach is to manage symptoms, suppress the errant parts of the immune system if possible that are causing the symptoms and improve function. But Paxlovid is a strong medication; I don’t think you could for example continue taking it off-label for your autoimmune condition.

It seems plausible you might have an improvement with your symptoms on Paxlovid since you suspect an autoimmune condition. For example, many women with autoimmune conditions experience improved symptoms during pregnancy because the immune system naturally lowers its barriers to prevent rejecting the baby.

It is true that neurological and autoimmune conditions can be set off by a virus… As I understand it, that is very well known, so that’s great observation on your part. You’re not wrong about that. Some type of stressor flips a switch or awakens some part of the immune system that causes it to attack parts of the body. That’s what happens with long covid.

For example, I have seronegative spondyloarthropathy and small fiber neuropathy. It’s thought to be an autoimmune response after a virus because I first started having neuropathy symptoms 2 weeks after a severe cold virus. And my dad has polymyalgia rheumatica (PMR) and inflammatory arthritis, which can sometimes occur that way. In his case, it came on after pneumonia and starting a statin (which is also suspected to start an autoimmune response in some people.)

The thing is (at least for me), there’s not that much I can *do* about. It doesn’t change the approach to treatment—ultimately we had to find the medication to turn down my immune system in the appropriate way regardless of what caused the change in my immune system. Unfortunately, it’s not so easy for some. For my dad PMR is much more straightforward both in diagnosis and medication.

It sounds like for you and I, not so much. It took 3 years for me to get a mostly confirmed diagnosis and it’s still considered “clinical” diagnosis because there’s no objective evidence. It’s annoying to not have a label, but I’m less bothered by it now because my rheumatologist helped me find the right treatment.

The only one thing I can think of for treatment that might be affected by it getting kicked off by a virus is that one of my neurologists said IVIG (immunoglobulin infusions) has sometimes been known to help in those situations. But your rheumatologist or another physician can’t really offer that or prescribe treatment without a known diagnosis.

What treatment are you currently on for your conditions? Are you getting relief and making progress, or not really? If not and if you don’t feel your rheumatologist is hearing you out, do you think it’s an option to get a second (or third or fourth) opinion? In total, I saw four rheumatologists until I found the “one” for me. Even rheumatology at Mayo misdiagnosed and didn’t quite hear me out. It happens that people miss things or aren’t the right fit with communication style.

I know I’m lucky in that I had the option to seek out someone else. The waits were still long, but it was worth it.

I’m sending you all the compassion and hope you can find a way forward. I can’t exactly say what to do, but figured it might help to share both my dad and I have been in a similar boat with an immune response set off by a virus and the uncertainty and pain that follows.

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I also noticed that all my joint pain and arthritis pain disappeared after 3 days in Paxlovid!

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