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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Hey there, Arthur,
Is there any way for us patients to push this unexpected result into research/clinical trials/ anything?
Remember how sad the end of that movie was? All of those people slipping back into their comas? That's how I feel: so very, deeply sad. After years of pain, I got real relief for awhile, and then slipped back into the debilitation and depression of chronic, constant pain. And I know there could be a really effective treatment out there if only someone took enough interest to figure it out.
What more can we do to get someone to pay attention?
Thanks very much!
All very good questions. I actually tried to reach out to Pfizer as well but couldn't get my email to get through for some reason. I need to call them to mention what others have observed here as well. They may already know of peoples inflamation relief etc. I also would suspect people have noted this with their primary care physicians as well which may help the cause if they hear this on an ongoing basis? Remember physicians see their pharmacuetical reps. on a routine basis, which you would think might be passed along this way as well.
As I mentioned previously, many companies become aware of not only the negative side effects but the positive as well which may prompt them to seek approval to begin additional trials for the new indication, in this case arthritic relief, which to me is huge. I'm fairly sure the drug in it's present form is obviously only recommended/prescribed for short term usage, 5 days, with respect to covid. It's definitely possibe it could be reformulated for long term usage but of course trials would need to take place with respect to efficacy for the control of inflamation etc. and safety, typically with respect to cardiac effects. The safety part of it would probably be easily achieveable since it's already met that threshold, at least in todays format/dosage. Unfortunately trials for efficacy would most likely take longer to see how it works in blind studies vs. placebos etc. Trials typically take a few years at best but hard to say here as it's already met some FDA hurdles. I sure wish it was simpler as it sure seems to have improved peoples daily functions, at least for a short period of time. I am going to see if I can find out if Pfizer is indeed looking at this possibility. BTW, I am actually a shareholder as well so I may go through investor relations and see if I can learn anything. I wish all well and Merry Christmas to all.
Arthur,
You may be a godsend for us patients, if you can move this along. Good karma for you and you might make some money out of it in the long term-- that's great! Win-win all around.
I am not optimistic about the doctor-to- sales rep-to- research chain of information. From the posts here, it sounds like our doctors are not recognizing the level of relief and the potential of the med. I can't blame them. They are over worked and over loaded with new information and practices, etc., which is a shame, since, as you pointed out, innovation is sometimes by chance. It's key to recognize and seize upon an unexpected opportunity.
I think there may be a connection to the Epstein-Barr virus, too. It causes mononeucleosis (spelling? sorry).
Please keep us posted! Any type of update would be welcome. And Merry Christmas to you.
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I'm looking for another common link among us.
Did you ever have mononeucleosis ? or Epstein Barr virus?
Thanks! Here's hoping something good comes out of this conversation...
Okay, I hope everyone who has commented on the positive relationship between paxlovid and their arthritis symptoms reads this.
I just spoke to a lady (Julie I believe it was) in the Medical Affairs office at Pfizer about the comments from several here on how it has relieved their arthrtic symptoms, at least for a period of time. She was extremely interested as she had not heard this before but took down my personal information. I mentioned I had read this on a Mayo Clinic forum, topic being related to paxlovid drug. She was definitely going to pass this news along but she also advised me to have anyone who has experienced positive responses to contact them at 800-438-1985 and hit #1 when prompted. This is normally the line where people can report adverse effects from a medicine but the place she wanted people to call and give their positive feedback. They will probably ask more questions about each individuals response etc.
Please do this to all that it applies to, can only help the cause!
Best to all!
I recently had blood work done and asked to include a test for the Epstein Barr virus. I remember as a teenager having such a sore throat that I went to the doctor. They did a strep test, which was negative, and sent me home.
Anyway, the blood test came back positive for the Epstein Barr virus antibodies. I truly think that the Covid virus reactivated the dormant Epstein Virus and that is why people are being diagnosed with auto immune viruses or contributing to the worsening of their own auto immune virus.
Thank you for this post, this is informative.
I was reading the exclusion criteria and unfortunately any 'chroniky' autoimmune conditions that many folks have such as myalgic encephalomyelitis/chronic fatigue syndrome, chronic Lyme disease, fibromyalgia etc. - we wont meet the criteria. There might also be a discrepancy in the state you reside in.
The irony is that the study has a premise of trying to see how a viral medication can help with the very things we have but cannot participate in.
Viral reactivation is a Thing...for sure.
Covid has in a Very bitter way opened up science for the long needed research regarding the interplay between our immune systems and the viruses that inhabit us.
Yes, I have has the exact same result after taking a course of Paxlovid for my first bout with Covid. At first I was not sure if I was just feeling better from the quick recovery from the acute Covid. However, I am about a month past the the onset of the Covid and the decrease in my chronic joint pain has continued at about a 90% decrease from the level I had experienced for the past 20 years. Also my basic energy level feels 10 to 20% better. (I am 72 and in very good overall health and am not on any prescription meds). I will look forward to how long the nice side effect of Paxlovid persists. (12/3/2023)
I've called Pfizer and reported the 4 month arthritis relief I experienced after taking Paxlovid. They currently have no trials in this area. Explained there were many others that experienced this relief. I don't know if they will follow up on this.
Insurance companies have ruined the medical field. Doctors hands are tied SO often that they can do almost nothing to really help us. It's all about the almighty $. Some just plain do not care any more. And I imagine they cannot keep up with all the new "information" out there. Some do try; some do not. Personally, I am fed up with it all. I've been to so many new doctors; specialists mostly, and cannot get answers, or help. I wish us all better care, but it's not happening. Nurses are quitting because they see the awful lack of care patients are getting. OK: I will step off my soap box now...