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.
Thanks. I will also email the manufacturer.
That would be great.
Maybe we can get some action from someone somewhere. Strength in numbers!
Wow, as I read this thread, my mind is going in the direction of the positive effects of Paxlovid on the body. I developed Covid 19 for the second time in June 2022. I tested positive a day after my husband. He had no vaccines, so his PCP put him on Paxlovid protocol. He is diabetic, high blood pressure, and is overweight. I tested positive the next day, but since I have no preexisting conditions I didn’t contact my PCP. I was 70 at the time, and was on no prescription medication. I first had stabbing pain in my ankle that I’d had surgery on in 2003. I had broken my ankle in Greece and had surgery to repair a broken tibia and fibulla. Later that day I felt achy. I used my free government test and tested positive a day after my husband. I felt like it was a fairly mild case with bizarre symptoms. After the ankle pain went away quickly I had an issue with bladder control. I’d be walking to the bathroom, not feeling any huge urgency, when it seemed like someone turned the faucet and it wasn’t me. I’d have urine streaming down my pajama leg, not pooling on the floor, but being absorbed by my pajamas. That continued during Covid and after. My first specialist appointment was with a local urogynecologist. She was very understanding. She ran tests and diagnosed me with an overactive bladder. First post Covid 19 diagnosis. Three weeks after testing positive for Covid my feet and ankles started swelling. It was not alleviated by elevation or icing. I saw my PCP who tried Lasix for 5 days, tracking my weight and urination. No change on either. I also took a diuretic, with no response.
I developed Lymphedema, 3 weeks to the day after testing positive for Covid my feet, and ankles started swelling. I researched online and diagnosed myself with Lymphedema. I called to make an appointment with my PCP. She checked my shin, and since the skin pitted when she pressed on it, she agreed it was Lymphedema. She referred me to Space Coast Lymphedema Clinic. By then the swelling had traveled up to my knees, which restricted my mobility. It was unaffected by icing or elevation. I did eliminate my salt intake. I had treatment for five months to get the lymph fluid moving and reduce my legs to normal size. I now wear knee high compression stockings and use a compression pump every night after dinner for an hour. I no longer have swelling in the lower extremities. But, I do continue the pump each night.
I started noticing shortness of breath on slight exertion. If I walked across a parking lot to a store, I’d be out of breath. I also woke up each morning with body aches. I was taking 600 mg of Motrin, an ibuprofen with my breakfast to function. Most evenings I’d take another 400 mg of Motrin with dinner. I used ibuprofen to function. I knew it wasn’t good for my stomach.
I was having very disrupted sleep. I’d fall asleep, but wake up every 2 hours. I’d try using the bathroom, but there was never a big urine output. Fortunately, I was able to fall back to sleep. But, because of the disrupted sleep, I was struggling with daytime sleepiness post Covid. I was ok driving, but when I stopped at a traffic light, I felt like I needed toothpicks to prop my heavy eyelids open. I was never a napped before Covid. But after Covid, I’d fall asleep anytime I sat down if I didn’t fight it.
My niece told me about Healthfirst Post Covid-19 Recovery Clinic that she had read about online. I called the next day and got a virtual interview. The nurse asked a lot of questions about my condition and recorded my resukts on her computer. She scheduled me to meet with the nurse practitioner the following week. The appointment was not clinical, no blood pressure check…
It was a face to face question/answer. She told me to feel free to expand upon any questions helping her to understand the effects of Covid 19 on my body. Based on that interview she asked if I’d ever had a sleep study. I gained 60 pounds post Covid in 6 months with no dietary changes. It did not respond to Weight Watchers or any weight loss method I’d used in the past. She referred me for a sleep study. The first night of the study, I woke up to use the bathroom. The sleep tech put me on oxygen at 2 AM. She said my oxygen level had dropped to 85%. I was diagnosed with severe sleep apnea, and prescribed a nasal pillow CPAp machine. It has become my new best friend. I am now getting at least 6 hours of sleep in bed, waking up only once to use the bathroom.
After a pulmonary function test, chest X-ray and 6 minute walking test, my pulmonary sleep doc prescribed an Albuterol Rescue inhaler to use every 4 hours as needed. If I know I have extended walking I use it proactively. I carry it in my purse, but I am not needing it that often.
The chest X-ray showed scarring in the lower part of my left lung. I was referred to a pulmonologist.
Based on the body aches, I was referred to a local rheumatologist. He sent me for extensive bloodwork when I left his office. Two weeks later he followed up by reviewing my bloodwork results. They indicated rheumatoid arthritis, but ruled out many autoimmune conditions mentioned in this thread. He started me on 10 mg prednisone, getting me off of Motrin. I took steroid for a month, and just had a followup. He has started wearing me off slowly since that appointment. I’ll take 9 Mg for a month, decreasing by 1 mg each month until I’m totally off of the steroid. The pulmonologist diagnosed me with bronchial asthma based on the pulmonary function test. Since I’m on a steroid, it’s also helping to reduce the inflammation in my lungs so the breathlessness has been alleviated. He said steroid helps asthma, so I will call his office when I am off the steroid. He will schedule a repeat pulmonary function test 2 weeks after stopping the steroid.
I had no autoimmune conditions prior to Covid-19 in June 2022. I have never taken Paxlovid. But, I am very interested in this thread. Each of us know our bodies better than any specialist or doctor. I pray for wisdom for each doctor I am seeing. Covid-19 is not only frustrating and challenging for the patient. It is also a huge challenge to the medical professionals. There is no magic pill that medical doctors can prescribe to treat the myriad of symptoms that individuals have postcovid19. Praying for wisdom for those who have seen post it I’ve results of taking Paxlovid on existing autoimmune conditions.
Hello. YES, YES, YES! My symptoms left almost instantly. I was able to walk without pain, walk up stairs normally. It was amazing. I was so sad when I took the last dose this morning, knowing that it would all start again. I am so disappointed to her your doctor was not open to exploring the possibilities of finding a like drug that would produce the same effects. I have been so anxious to take this information to my rheumatologist in hopes of finding a solution for myself. The current shots that might help me are so expensive my insurance flat denies approval to use them. Maybe if this helps enough people the R&D at the drug companies might take notice, but then they will probably raise the price of the medication to be out of reach for most of us, even if we have insurance.
HI Lillybean032,
Thanks for your contribution!
If you don't mind, would you tell us what is your disease?
Some of us here have contacted Pfizer to let them know about the good effects of Paxlovid on our non-Covid diseases. If you go to the Pfizer website, there is an email address.
Hey, let's be optimistic about the medication 🙂
Please let us know what your doctors say.
To all taking paxlovid. It's a great drug for Covid for sure. But make sure you get latest kidney friendly version, if you take it moving forward.
From the first day I took Paxlovid my terrible arthritis pain in my hip disappeared. It stayed gone for 4 months and now it back. It is painful after sitting for long periods and then standing, and getting up first thing in the morning. I cannot get Paxlovid again unless I get Covid again. The only thing that could have stopped my arthritis is the Paxlovid. I would like to get another prescription for the medication and wonder if there are any trials I might try to see if I get the same result.
HI arthur57,
Thank you for your contribution.
Can you explain more about the "latest...version"?
I didn't know that there was more than one version of Paxlovid.
Do you fit the parameters of 1) previously diagnosed with an autoimmune disease/arthritis and 2) got relief of those AI/arthritis symptoms from Paxlovid? I'm keeping track of the number of people who post who fit these parameters specifically. Not sure why I'm doing this... We are at 16 people so far.
Thanks again!
Hi t4young12345,
Thanks for contributing.
About 16 other people have posted here that they have gotten relief from their arthritis or autoimmune disease symptoms while taking Paxlovid for Covid infections.
I don't think that anyone has been able to get Paxlovid prescribed unless they had an active Covid infection.
Please consider emailing Pfizer (the manufacturer of Paxlovid) to let them know. You can get to their email from their website.
Please let us know what your doctors say about it.
I have emailed Pfizer and am awaiting a response. Thanks for that idea.