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Did PAXLOVID also relieve your arthritis and autoimmune symptoms?

Posted by annewoodmayo @annewoodmayo, Jul 15, 2023

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.

kyengler | @kyengler | Nov 3, 2023

I have been plagued by arthritis in knees and elbow and tendinitis in both Achilles. This all started with a fever in March of 2022 and so far no drug regimes or PT has offered any help. My rheumatologist is stumped and has suggested I seek a second opinion.
I was hoping that perhaps an anti-viral might help. Did anyone have success in getting their doc to prescribe for this? I’m at my wits end with this and almost immobile!

REPLY
1 reply
dianagc | @dianagc | Nov 4, 2023

I had the same great results with Paxlovid, but they only lasted for about two-three weeks. It was wonderful! I’m now back to my regular long term Covid symptoms plus one I didn’t have before, constipation. Apparently Paxlovid is not to be taken long term. My PCP did tell me that current studies show super microscopic blood clots in the brain of long Covid patients! These had to be done on cadavers. Followup studies are being done but that’s all I know.

I find it helps NOT to talk about it constantly. I distract myself with activities I enjoy and do what I can to be happy. I know it’s Pollyanna-ish but it seems to help. Sending healing energy.

REPLY
2 replies
cindelee617 | @cindelee617 | Nov 5, 2023
In reply to @dianagc "I had the same great results with Paxlovid, but they only lasted for about two-three weeks...." + (show)
@dianagc

I had the same great results with Paxlovid, but they only lasted for about two-three weeks. It was wonderful! I’m now back to my regular long term Covid symptoms plus one I didn’t have before, constipation. Apparently Paxlovid is not to be taken long term. My PCP did tell me that current studies show super microscopic blood clots in the brain of long Covid patients! These had to be done on cadavers. Followup studies are being done but that’s all I know.

I find it helps NOT to talk about it constantly. I distract myself with activities I enjoy and do what I can to be happy. I know it’s Pollyanna-ish but it seems to help. Sending healing energy.

Jump to this post

I do the same thing I do everything I can not to think about it because I don't want to own it. The more I think about it the more I have to accept it and I don't want to. I keep looking at it as it can always be worse I know so many other people with long cover that are far worse off than I am. I do not know them personally but I have read a lot on Long covid and some of these people are suffering tremendously.

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marye2 | @marye2 | Nov 6, 2023

I've had MCTD for almost 30 years. I was on Methotrexate for about fifteen years and I was able to work fulltime until retirement. I am not on it, anymore. But--I can say that attending to hydration is seriously important for feeling active. I also take D3 and sublingual B-12. I cannot always do a full day of activity, but I do pace myself with a quiet day before a busy one and an easy day afterwards. Eating well matters also, so avoid processed foods and anything you think you might be intolerant to, like potatoes, tomatoes, dairy, whole wheat and sugar. I do agree that long Covid seems alot like autoimmune disease. This last time, I took Paxlovid and recovery was so much better. In Europe, they treat this with antibiotics, and research here is looking at it. But, it may be that the real thing is minding your microbiome (see Terry Wahls writings).

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1 reply
annewoodmayo | @annewoodmayo | Nov 6, 2023
In reply to @marye2 "I've had MCTD for almost 30 years. I was on Methotrexate for about fifteen years and..." + (show)
@marye2

I've had MCTD for almost 30 years. I was on Methotrexate for about fifteen years and I was able to work fulltime until retirement. I am not on it, anymore. But--I can say that attending to hydration is seriously important for feeling active. I also take D3 and sublingual B-12. I cannot always do a full day of activity, but I do pace myself with a quiet day before a busy one and an easy day afterwards. Eating well matters also, so avoid processed foods and anything you think you might be intolerant to, like potatoes, tomatoes, dairy, whole wheat and sugar. I do agree that long Covid seems alot like autoimmune disease. This last time, I took Paxlovid and recovery was so much better. In Europe, they treat this with antibiotics, and research here is looking at it. But, it may be that the real thing is minding your microbiome (see Terry Wahls writings).

Jump to this post

Marye2,
Did the Paxlovid help your MCTD symptoms?

REPLY
1 reply
annewoodmayo | @annewoodmayo | Nov 6, 2023
In reply to @dianagc "I had the same great results with Paxlovid, but they only lasted for about two-three weeks...." + (show)
@dianagc

I had the same great results with Paxlovid, but they only lasted for about two-three weeks. It was wonderful! I’m now back to my regular long term Covid symptoms plus one I didn’t have before, constipation. Apparently Paxlovid is not to be taken long term. My PCP did tell me that current studies show super microscopic blood clots in the brain of long Covid patients! These had to be done on cadavers. Followup studies are being done but that’s all I know.

I find it helps NOT to talk about it constantly. I distract myself with activities I enjoy and do what I can to be happy. I know it’s Pollyanna-ish but it seems to help. Sending healing energy.

Jump to this post

Dianagc,
Did you have a diagnosed autoimmune disease before Long Covid?
If so, did the Paxlovid help your already- existing- disease symptoms in addition to your Long Covid?
Thanks

REPLY
annewoodmayo | @annewoodmayo | Nov 6, 2023
In reply to @nayhar1 "Hi I’ve got type one diabetes (23 years) I am slim & try to stay fit..." + (show)
@nayhar1

Hi I’ve got type one diabetes (23 years) I am slim & try to stay fit but was diagnosed RH 4 years ago. The past two years the flare ups have been awful I’ve been suffering & put on methotrexate & hydroxychloroquine medication, which made my hair fall out. I still had terrible pains in my fingers& joints. I had Covid was given paxlovid & for the first time in 8 months my rings have come off my fingers, they were previously stuck due to the swelling I feel like my RH has vanished I haven’t felt like this for years. I have been told to stop the methotrexate for 3 weeks post covid. I found this post searching the link between paxlovid & Rheumatoid arthritis relief. I’m honestly amazed it’s been 8 days since taking it & honestly feel like my RH has gone 😊

Jump to this post

Hi Nayhar1,

Has your doctor had any suggestions/ideas/recommendations?

We are trying to use this thread to find out if ANY doctor anywhere is offering solutions or ideas or anything.

It's frustrating to have had a "cure" -- accidental and temporary-- and no doctors to follow up with it.

Thanks for contributing!

REPLY
marye2 | @marye2 | Nov 6, 2023
In reply to @annewoodmayo "Marye2, Did the Paxlovid help your MCTD symptoms?" + (show)
@annewoodmayo

Marye2,
Did the Paxlovid help your MCTD symptoms?

Jump to this post

I am not really sure. I do know that I was really in need of hydration and had a week of constipation. I think it helped the virus, not the MCTD. Methotrexate was really great for me, as it eliminated much of the swelling and pain. However, changing diet to non processed and getting in daily walks (no matter what) and other movement like water exercise and pilates worked out well. Others who are doing well say the same thing.

REPLY
1 reply
annewoodmayo | @annewoodmayo | Nov 7, 2023
In reply to @marye2 "I am not really sure. I do know that I was really in need of hydration..." + (show)
@marye2

I am not really sure. I do know that I was really in need of hydration and had a week of constipation. I think it helped the virus, not the MCTD. Methotrexate was really great for me, as it eliminated much of the swelling and pain. However, changing diet to non processed and getting in daily walks (no matter what) and other movement like water exercise and pilates worked out well. Others who are doing well say the same thing.

Jump to this post

Hi Marye2,
Thanks for the reply!

It's so curious how the same medication can affect people in different ways. One dose of methodrexate gave me the runs for a month!
Thanks, again!

REPLY
annewoodmayo | @annewoodmayo | Nov 7, 2023
In reply to @kyengler "I have been plagued by arthritis in knees and elbow and tendinitis in both Achilles. This..." + (show)
@kyengler

I have been plagued by arthritis in knees and elbow and tendinitis in both Achilles. This all started with a fever in March of 2022 and so far no drug regimes or PT has offered any help. My rheumatologist is stumped and has suggested I seek a second opinion.
I was hoping that perhaps an anti-viral might help. Did anyone have success in getting their doc to prescribe for this? I’m at my wits end with this and almost immobile!

Jump to this post

Hi kyengler,

I am not a doctor. I read somewhere that arthritis can come on suddenly after a person has a virus.

Do you have a primary care physician? Maybe he/she could tell you what kind of doctor to go to in order to see if a virus caused your arthritis. And that doc could prescribe something maybe.

If you get any information, please can you share it here with us?

I think there is one person in this conversation thread who has gotten either Paxlovid or another antiviral. I think that person got it online. (I'm not comfortable with getting medication through online sources, myself, so I haven't pursued it.) There are a lot of comments here now, but you might be able to find their post.

Sorry, this is getting long...Have you read any of the posts in the "Chronic Pain" thread? There are a lot of good ideas for pain relief there. Maybe something would work for you. Many of them are not prescription, are cheap, at-home remedies, or OTC (over the counter).
I love Icy Hot spray and arnica gel - the CVS store brand works fine for me.

Here's hoping we all feel better!

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