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!
Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
One more thought. Paxlovid includes two drugs: nirmatrelvir, which actually inhibits Covid, and ritonavir, which was designed against HIV, but is included in Paxlovid because it inhibits a liver enzyme that breaks down other drugs, including nirmatrelvir. You don't know whether the apparent effect on your symptoms requires both drugs or whether ritonavir alone might have the same effect. If it's not currently possible to try Paxlovid, it might be worth asking a Dr. to prescribe ritonavir alone. That is almost certainly legal, and is probably even reasonably priced.
One reason Paxlovid could have helped you would be if the ritonavir increased the level of some other drug that you're taking. The doctors probably wouldn't be thrilled if this is what's going on. But if it is, it would be nice to know. Or it could be that there is some naturally occurring compound whose metabolism is affected by ritonavir, and that is what is improving your symptoms.
@annewoodmayo
Yale has a research study to test whether 15 days of Paxlovid, compared with placebo, can improve the health of people living with Long COVID. You may contact them to see if you may participate. Information and their email address 👇🏻:
https://medicine.yale.edu/cii/research/paxlc-study/
Yes, there are many centers of excellence conducting this trial as well as NIH
My mother after having Covid was diagnosed with Rheumatoid arthritis, then told she had Osteoarthritis.
She got Covid a second time last winter and was given Paxlovid.
All her symptoms disappeared completely.
She was absolutely 100% better and back to her old self.
She is now suffering terribly again with osteoarthritis???
And is taking Hadlima.
After trying Methotrexate which made her really sick.
We need to know if there is a medication that is effective like Paxlovid!
Please contact me.
Hi Jacsho22,
So there do seem to be a few people in this situation.
I don't know what to do next. Do you have any ideas?
Now I have been kinda overwhelmed by health and am not able to pursue this vigorously. I am looking into low dose naltrexone, and it's taking up all of my energy.
I tried to explain to my rheumatalogist but she didn't listen carefully. I think I may have posted about this already.
Sympathy on methotrexate. It does help some people. One dose gave me "the runs" for a month, no exaggeration. I have taken a lot of different meds since diagnosis in 2012.
I think it's possible that the osteoarthritis in your mom may have nothing to do with the Covid/virus. Lots of older/old-ish folks have it from wear and tear of life. I have it in some joints. My docs don't pay much attention to it; sort of like grey hair.
I wonder, did your mom have any symptoms of autoimmune disease before her first bout of Covid? Maybe symptoms that she or her doctors brushed off? They can look like a lot of other diseases. (My earliest symptoms started when I was about 15. I got diagnosed at age 52. A long time of gaslighting, brush-offs, blame.)
I am wondering about chronic Epstein Barr virus as a cause of what is now my "autoimmune disease." Did your mom ever have "mono"?
I had mono in high school, possibly before my first symptom (R hip pain/lower back). A few years ago, an ear nose and throat doctor tested me for Epstein Barr, which was active when I was experiencing neck and face problems.
I'm getting pretty tired so I'm gonna get off now.
It's good of you to take care of your mom. Bless you! both of you!
thanks for info about the clinical trials 🙂
You can't participate if you had a disease before Covid. I guess that any other illness confuses their results.
I'm really interested in people whose non-Covid diseases were really helped a lot by the Covid medicine.
Thanks for your input!
Hi, I had the same experience!! Because I was sick with covid I could not receive my biologic infusion for my rheumatoid arthritis. Typically when this happens my left knee will flare up, fill with so much fluid i have difficulty waking. Since taking Paxlovid my symptoms have improved. While waiting for my infusion I’m typically miserable, but I canceled my appointment to be drained because the fluid went down on its own, which is a miracle to me!
I will be bringing this up to my rheumatologist but something tells me they don’t want to hear it bc the make money off of us and our need for the biologic.
Thanks for sharing your experience because I thought I was losing it!!
I tested positive on Wednesday and my Rheumatologist prescribed me Paxlovid the same day. She told me to go off my Methotextrate for at least a week and I was panicking, 2 weeks total without it would put me struggling to walk without pain. It's been 9 days since my last Methotextrate and day 4 of the Paxlovid and my joints feel better than they have in "literally" 5 years. I woke up this morning and realized that my whole body didn't ache. I plan on contacting my doctor tomorrow to ask why this medication has helped so much. I'm glad to see it is not just me.
Just the opposite! Either the vaccines, or Paxlovid introduced me to one hellish autoimmune condition. All I can say is stay away from any medicine associated with Covid until they flush out all the autoimmune complications. Vaccinations use to be cultured virus injected in small amounts to initiate the immune response to fight the virus. Covid, I believe, is the first attempt to fool the immune system with spike protein to fight Covid. Well like the old saying goes -"You can't fool mother nature" and in the case of Covid - tens of millions are suffering the consequences with hyper active immune systems attacking their bodies.
Hi @jacsho22
Im not sure if your aware there are currently recover studies running now in usa with Paxlovid.
for long covid treatment. I am eager to try Paxlovid. Famcyclovir helped some symptoms , but not totally resolved, but did help.