Did PAXLOVID also relieve your arthritis and autoimmune symptoms?

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.

Did you know that the NIH and many other institutions started trialing PAXLOVID on Jan. 23rd, 2023 to see if it had any impact on LONG COVID, which many... thousands and thousands believe will be is own "autoimmune" someday.
Using Pax as a long course treatment and not just the 5 days... but a 15 day course do to exactly what you described. Covid is said, can reactivate "flare" other autoimmune conditions and viruses in patients...HIV, herpes, lupus, shingles. Sjogrens, SPS, etc etc.
I was never dx with an autoimmune disease before contracting Covid and getting that Vaccine (which is still a spike protein)...SPIKE is spike! My body, my immune system reacted violently to both. I now have been diagnosed with 5 autoimmune diseases. We are discussing doing the Paxlovid trial protocol on me just to try and see if it helps. I would love to drive, think, eat, walk, be intimate with my spouse, manage my own money, WORK... again.
Mayo Clinic has a long covid clinic....I was treated dismissively and inappropriately because I couldn't afford to travel, stay in a hotel for 30 days, supply all my own food, have my spouse miss work for a month (because I can't manage day to day activities solely on my own). It took 24 specialists at Mayo, $500k in claims before they referred me to their long covid and within one day the Long covid clinic doctor said YOU HAVE LONG COVID.
So, advocate for yourself...push you doctor to read on LC and vaccine injury. If Paxlovid worked like that temporarily, see if they'll do their due diligence and prescribe the 15 day protocol. It may not fix your autoimmune disease but it may clear the 'viral persistence' of Covid19 in you which can only help your immune system. Goodluck.

I, like you, had developed a dx that allowed me to get IVIg. Covid either activated or inflamed my immune system and now u have several autoimmune diseases. Mayo Jax, misdiagnosed me as well. It's pretty bad when you have to beg for testing you know will come up positive. For me it was if they were trying to disprove what my referring neurologist already diagnosed me with. He sent me there for a rheumatologist neurological I had so much going on other than neuro. Oh well. We were fortunate to get diagnosed and the care we need. It's a frustrating condition though. Unlike cancer. We are all just managing symptoms. Living in pain and no true prognosis is very hard. Be well!

Hey, thanks so much for replying!

There's a big difference in our circumstances. I had autoimmune dx long, long before I got Covid (twice).

Boy, you have my sympathy on the Long Covid stuff!

I got Covid the first time in October of 2020. It's all kind of a blur, but I think that there weren't medications for non-hospitalized patients at that time. I stayed home. All of my nurse relatives and friends suggested that I stay away from hospitals unless I really, really needed care there. It was a nightmare in their hospitals.

When the symptoms kept recurring after a couple of weeks, nobody at that time knew about Long Covid. Same as you, people thought I was nuts or telling lies or whatever... I thought I was going nuts and my brain just wouldn't work right!

I will read through your message again (my brain still isn't as sharp as it was).

And let me thank you again for taking the time to reply! It's amazing how helpful people are on this site and how reassuring it is to know that other people are experiencing similar things.

Good luck with your health issues, too!

There are a lot of things you can do to help with cognitive issues of LC. Read everything you can by James Jackson @ Vanderbilt. My brain fog, some still there is improving. Ivig does not help the cognitive issues at all. I'm about to start my workout which I must do daily or I slide or flare. I think it's a neurovascular issue but Goodluck trying to get anyone to read Pretorios's work on microclotting or brain inflammation. But I will try and send you links. I'm usually easy better mentally after I workout

I thought your post was really interesting, so I researched it a bit. The first thing I learned is that the main roadblock to doing the experiment you want to do (taking Paxlovid when you don't test positive for Covid) probably isn't your rheumatologist, but the federal government. There was an article from CBS in May that says the following under the heading "No off-label Paxlovid yet":

"The FDA's approved label for Paxlovid is limited to treating infected "adults who are at high risk for progression to severe COVID-19." Doctors typically have the freedom to prescribe fully approved drugs "off-label" for other reasons to their patients, beyond the FDA's approval. But because Paxlovid has only been allowed under emergency use authorization, doctors could not prescribe the drug for any unapproved reason outside of clinical trials, like for treating long COVID symptoms or to try and prevent infections. Since all current U.S. supplies of the drug were labeled under emergency use authorization, this restriction will effectively remain for now."

The article says that the free Paxlovid from the government, and presumably this restriction as well, will probably end later this year. They predict that a 5-day course of Paxlovid will then cost >$500 (Apparently it's being sold in China for ~$300).

But even after the government gets out of the way, I suspect it will be hard to find a doctor who will be willing to participate in your experiment. Doctors, and the administrators and lawyers who work with them, are very risk averse, and like to stick to the "standard of care," unless there's a really dire situation, when they might try more creative solutions.

If I was in your situation, I might tell the story to my PCP, say directly that I want to try another course of Paxlovid, and ask if they know of anyone who might help. I suspect there are doctors out there who would find your story interesting and might be willing to prescribe it, as long as off-label uses are legal. An older, experienced, and well-connected PCP might have a suggestion, or maybe you could ask the rheumatologist, since another rheumatologist might be a candidate. Infectious disease doctors, who mostly spend their time on HIV/AIDS and hepatitis C patients, have lots of experience with antiviral drugs, might also be a possibility.

It might be interesting if you asked the people in the Autoimmune Diseases group here whether they thought Paxlovid helped their symptoms.

Good luck with your quest.

Yes I have an undiagnosed autoimmune illness with Fatigue and joint pain that started after I had a bilateral mastectomy and reconstruction surgery. Everyone said it was a result of the cancer treatments and surgeries. I had Covid and took the Paxlovid and for the first time in 18 months I felt like my old self. My fatigue and joint pain were greatly diminished. I told all my Doctors..primary care Dr, Rheumatologist, my oncologist and my plastic surgeon. They were not able to draw any conclusions. I contracted Covid again about a month ago and had the same results while taking the Paxlovid. I have been trying to research why it mitigated my joint pain and fatigue. . I’m not sure of the mechanism in my situation, however, it makes me wonder if this antiviral medication which is designed to decrease the viral replication/load, therefore also would then decrease inflammation due to said lesser viral load and provocation, as C-19 causes immune response inflammation.

Hi Volunteers,

Can somebody move this discussion to the Autoimmune section? (I don't know how to do that...sorry)

Thank you for all of your work here!

Hello, Volunteer Mentors!

Can somebody move this discussion? : )

Thanks, again, for all you do!

Did u happen to see Wm. Cheshire in neurology? I've spoken to almost a dozen people on a Dysautonomia site that said the same as me and you. Just curious. I saw 5 neuros at Mayo Jax. I have had to submit for addendum to my chart because there was a lot if mischarting. They don't let you record your appts at Mayo in Florida as they say they're following the law, but when you call its always "this call is being recorded" ok, sorry for the rant. It just makes me symptomatic when I think about it.