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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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Can you send me the email for Pfizer and I definitely will.
Yes for sure. You can use the following email:
pfizermedicalinformation@pfizer.com
I actually went through a different email (I believe it might have been via an investor email) but I received a reply from the above email address. They also tried to call me this morning and asked me to call them at 800-438-1985 which I did late this morning. If you call that number you need to hit #1 , then stay on the line for live representative. They really want to talk to people who experienced the arthritis relief and will ask other questions from a personal perspective, like what form of arthritis, other meds, etc. The above number is one which they would typically receive concerns about a particular medication, in this case, of course you would be reporting a positive side effect lol. Anyway, you can send an email explaining your positive effect or call them, either should work, although they may call you if you leave them your number which I did via my initial email! Hope that helps!
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3 ReactionsThank you!
Will call tomorrow.
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2 Reactionsarthur57,
thanks for picking up my slack here and giving out the number and email again.
Does anyone have any other ideas about how to get this researched officially?
I am so sad that there seems to be help but we can't get it.
-Anne Wood
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1 ReactionI am glad to hear that the Paxlovid helped your symptoms. Had you lost your taste/smell with your Covid? I lost mine in December of 2022. I’m at my wits end lately and am just wondering if all I need to do is take a pill to get my taste/smell back. I had the Epstein-Barr Virus back in 1991 after my son was born. I was very sick and my doctor couldn’t figure out what was wrong with me. I slept pretty much the entire day, except for waking up to take Lidocaine so it would coat my throat so that I could swallow some food and then go back to sleep. I’m sure I was given antibiotics, but they didn’t really do anything for me. Time is what it took and I finally felt better after about 15 days. I’ve given myself time to get my taste/smell back. I’m even having acupuncture, but no big changes.
Hi lkirnbauer,
You would probably get more responses if you posted in another conversation of "Post Covid recovery" section. This conversation thread is about people with autoimmune disease/arthritis BEFORE they got Covid.
Hope you get some some good answers!
Anne Wood
I have ulcerative colitis, which is an autoimmune disease. For the last several years I have also suffered from idiopathic neuropathy. While taking Paxlovid I had absolutely no pain. In addition I lost weight without a change in diet. I googled and found that Paxlovid can lower blood sugar. I made an appointment with my PC to discuss whether my neuropathy is related to blood sugar. He rather doubts it, but put me on metformin to see if it helps with my neuropathy. I plan to share this chain with my dr and contact Pfizer and report my experience. I’m glad I found this discussion because it confirms there is something in Paxlovid that can eliminate my pain.
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2 ReactionsHi plong1956,
Thanks for joining us. Many of us with other autoimmune diseases also have gut issues, too. (and skin, and eye, and other)
It's great that you can call Pfizer. There is strength in numbers, hopefully!
Anne
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2 ReactionsGood morning, everyone!
Sorry I disappeared for a couple of months. Haven't been well. Using energy for family and health.
It's great that folks have been emailing Pfizer
and calling Pfizer.
Yesterday I emailed the National Institutes of Health. There are various sub-divisions. The closest to our diseases that I found was the Arthritis division.
Maybe you could email them, too? Maybe if we all follow a similar format, our emails might get more attention? I don't know but it might be worth a try.
email address: NIAMSinfo@mail.nih.gov
subject line: Paxlovid relieves autoimmune and arthritis pain- What next?
I kept it really brief and to the point. I included the following information:
1. "official" diagnoses, type of specialist doctor for each diagnosis, year of each diagnosis
2. month and year of Paxlovid prescription with Covid infection
3. result of Paxlovid use - little pain, more energy
4. there are other people in the same situation who are posting on the Mayo Clinic Connect patient chat board
5. a list of questions (sort of demands)
Is anyone researching this?
How can we get someone to research this?
What can we do next?
How can we get an appropriate medication, like Paxlovid or something similar?
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Almost immediately, I got an acknowledgement email. It said they would send a more specific answer within 5 business days.
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what do you all think about contacting the FDA, too? Anyone have the energy to search out the appropriate contact information there? (I don't, sorry)
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Hope everyone is managing to hang in there!
What r the downsides to Paxlovid? Is it hard on the kidneys?