Did PAXLOVID also relieve your arthritis and autoimmune symptoms?

I emailed Pfizer too! Great work. The more of us the better. Do a search for online doctors who will prescribe medication for COVID — that’s how I get it. Plus my OB gets it for me. I have a new rheumatologist who I think will prescribe it too. I’m not someone who takes medication lightly. I take ibuprofen maybe 3 times a year. But Paxlovid has been so life changing for me that I make sure I have it on hand when a flare comes upon me. I have yet to be officially diagnosed with a specific disorder. I get very ill if I accidentally ingest gluten but I’m not celiac. I have every Graves symptom but my thyroid is normal. I’ve been debilitatingly sick on & off for 15 years. I’ve always suspected it was autoimmune but no one could find anything “wrong” with me. I finally found a great doctor about a month ago & I’m undergoing extensive testing. As far as I’m concerned, I’d be happy taking Paxlovid forever. Right now I take about 2 days worth every couple of months and that seems to be working to keep my symptoms under control. This is entirely my own protocol. No doctor has recommended this. But it works for me. I should also say that I have no kidney or liver disease. Paxlovid is dangerous if you have kidney or liver issues. I researched ritonavir (in Paxlovid) and found that after HIV patients had been on daily ritonavir for about 7 years they experienced vision loss, so ritonavir is only a “booster” with antivirals now in much lower doses. For this reason, I believe it’s very safe at the levels I’m taking it. I’m so glad you emailed Pfizer. I begged them for a study. I also emailed multiple directors at NIH using their contact info on their website. I got a response back saying my experience is “intriguing” and they are “passing it around”. They told me there is a study at Stanford but when I contacted them I was told it was more of a long haul study. However, NIH did tell me they are looking into Paxlovid for autoimmune disease. I hope it doesn’t take years.

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!

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!

I’m trying to be seen at Mayos. Have long covid for 6 months and am going there to get advice. Should I forget about going?
I get frustrated reading all the post, cuz they talk about things I don’t know about..

Have you ever tried just taking ritonavir, without the nirmatrelvir? Nirmatrelvir is necessary for treating COVID, but it doesn't sound like anyone here has tested whether is is necessary for the effect on their autoimmune symptoms.

Have you ever tried just taking ritonavir, without the nirmatrelvir? Nirmatrelvir is necessary for treating COVID, but it doesn't sound like anyone here has tested whether is is necessary for the effect on their autoimmune symptoms.

Ritac,

That stinks, sorry to hear it.

Are you going to ask your doctor about it? My doctors won't prescribe it without current Covid.

Another person suggested contacting the manufacturer of Paxlovid to let them know and ask for them to do something. I went to their website and there is an email address. I think Pzifer is the manufacturer.

Still another person contacted the NIH.

Best to you,
Anne

Great question. I have not taken ritonavir alone because I strongly suspect that my autoimmunity is the result of a severe norovirus I had in adolescence. My most prominent symptoms are gastrointestinal. Noroviruses, as I understand it, are related to, or similar to, coronaviruses. For this reason, I suspect both parts of Paxlovid work well for me. Researchers know that noroviruses can cause autoimmune disorders. What I don’t understand is WHY it’s taken so long for them to figure out that antivirals plus boosters like ritonavir for HIV work well for other autoimmune disorders. I guess because AI disorders mostly affect women? If autoimmunity led predominately to erectile dysfunction, this would have handled 50 years ago.

Hi, Anne.
I have an appointment with my Rheumatologist on Nov. 16th. I will for sure mention it to her. I'm not sure that they will prescribe it as a daily, long term medication. It's probably like antibiotics. Too much can make bacteria resistant. But... I WOULD like them to be aware of the virus/autoimmune connection. I think it could be important for research.
You take care! Hope you are doing better
Rita