I’m sorry it was so frustrating. And must be even more frustrating experiencing an improvement on a temporary medication and to not know why

My symptoms did not improve on Paxlovid. Covid exacerbated my symptoms eventually, after the virus cleared. Paxlovid did as intended and I recovered from the acute infection more quickly and wasn’t hospitalized.

I think it’s understandable your rheumatologist may not know what to make of your observation. I don’t know what treatment you’re on, but I wonder what action could they take based on knowing your symptoms improved on Paxlovid that could be drastically different than what you’re already doing?

The general approach is to manage symptoms, suppress the errant parts of the immune system if possible that are causing the symptoms and improve function. But Paxlovid is a strong medication; I don’t think you could for example continue taking it off-label for your autoimmune condition.

It seems plausible you might have an improvement with your symptoms on Paxlovid since you suspect an autoimmune condition. For example, many women with autoimmune conditions experience improved symptoms during pregnancy because the immune system naturally lowers its barriers to prevent rejecting the baby.

It is true that neurological and autoimmune conditions can be set off by a virus… As I understand it, that is very well known, so that’s great observation on your part. You’re not wrong about that. Some type of stressor flips a switch or awakens some part of the immune system that causes it to attack parts of the body. That’s what happens with long covid.

For example, I have seronegative spondyloarthropathy and small fiber neuropathy. It’s thought to be an autoimmune response after a virus because I first started having neuropathy symptoms 2 weeks after a severe cold virus. And my dad has polymyalgia rheumatica (PMR) and inflammatory arthritis, which can sometimes occur that way. In his case, it came on after pneumonia and starting a statin (which is also suspected to start an autoimmune response in some people.)

The thing is (at least for me), there’s not that much I can *do* about. It doesn’t change the approach to treatment—ultimately we had to find the medication to turn down my immune system in the appropriate way regardless of what caused the change in my immune system. Unfortunately, it’s not so easy for some. For my dad PMR is much more straightforward both in diagnosis and medication.

It sounds like for you and I, not so much. It took 3 years for me to get a mostly confirmed diagnosis and it’s still considered “clinical” diagnosis because there’s no objective evidence. It’s annoying to not have a label, but I’m less bothered by it now because my rheumatologist helped me find the right treatment.

The only one thing I can think of for treatment that might be affected by it getting kicked off by a virus is that one of my neurologists said IVIG (immunoglobulin infusions) has sometimes been known to help in those situations. But your rheumatologist or another physician can’t really offer that or prescribe treatment without a known diagnosis.

What treatment are you currently on for your conditions? Are you getting relief and making progress, or not really? If not and if you don’t feel your rheumatologist is hearing you out, do you think it’s an option to get a second (or third or fourth) opinion? In total, I saw four rheumatologists until I found the “one” for me. Even rheumatology at Mayo misdiagnosed and didn’t quite hear me out. It happens that people miss things or aren’t the right fit with communication style.

I know I’m lucky in that I had the option to seek out someone else. The waits were still long, but it was worth it.

I’m sending you all the compassion and hope you can find a way forward. I can’t exactly say what to do, but figured it might help to share both my dad and I have been in a similar boat with an immune response set off by a virus and the uncertainty and pain that follows.