Pmr and long covid and tapering prednisolone

[Claremarie83]

Hi,

Question of the day - does anyone else have long covid before pmr? Did you manage to taper off prednisolone successfully?

Just a musing really - glossing over my bio - I was getting progressively worse from 2021 to 2024, more and more disabled, I had bloods taken over that period and nothing, no inflammation, nothing wrong apparently but my health declined so much I had to give up everything- work, social life, gigging, everything in favour of resting at home and sleeping alot. I Had bloods tested again this year and inflammation was high so started prednisolone. I'm just wondering whether steroids might be the answer for long covid perhaps? as there's talk of it being an autoimmune thing.

That's it really, just curious

So do you have long covid? And did you manage to taper right down or stop the steroids?

But of a niche question but I'm hoping someone out there might have both and maybe has the answer

Thanks for reading

[piglette]

A number of people on this board suspect they got PMR after getting Covid. Quite large doses of steroids are often given to people with bad Covid and the dose is then reduced for long Covid. Covid is not an auto immune disease, although it is suspected that it might trigger an auto immune problem. In my case I believe stress triggered PMR.

[Claremarie83 in reply to piglette]

Thanks piglette, Ah that's interesting!

Maybe steroids are the answer then for long covid too. Hoping everything works out as I taper down 🤞🤞

[piglette in reply to Claremarie83]

Steroids are used for around two hundred different ailments. They are a wonder drug apart from the side effects!!

[PMRpro Ambassador in reply to Claremarie83]

I think it will depend on how the LC is manifesting. It is almost certainly an autoimmune disorder that has been triggered by the virus - but all sorts of viruses and other conditions can trigger an autoimmune disorder by upsetting the immune system, "breaking" it and it goes haywire, unable to recognise body as self and so it attacks body tissues. It just so happens there has been an awful lot of Covid so there are also an awful lot of resulting autoimmune problems, together with the added complication of the Covid virus persisting in the body and causing additional problems.

If the result is inflammatory, steroids might help but there are other things that pred doesn't work as well for and other drugs might be better. It isn't simple.

[Claremarie83 in reply to PMRpro]

That makes a lot of sense! I think I'm just frustrated that the GP doesn't look at the big picture, they look at symptoms and treat them but don't look for the whys

I guess I'll find out if prednisolone is what's helping when I taper low enough

[PMRpro Ambassador in reply to Claremarie83]

In autoimmune disease about all that CAN be done is manage the symptoms because the whys and hows aren't always known. And it is sometimes a case of trial and error to find what works best.

[CluckyChicken in reply to piglette]

That's very interesting, My Mum had Covid back in January and immediately started with stiffness in her hips, shoulders and arms and has since been diagnosed as having PMR - we're convinced the Covid triggered PMR but doctors deny there is any link.

[piglette in reply to CluckyChicken]

I think it has been documented that Covid has been known to trigger PMR.

[SnazzyD]

I’ve had long Covid twice, the first was about a year and in that time I tapered off Pred for GCA at 5 months in. The second from 2022 took about 7 months when I was off Pred and I didn’t relapse or need Pred. There are those here whose autoimmune condition started after a Covid infection. Both Covid and autoimmune conditions are a bit of a mystery as to why people get them in the way they do. Pred can help with the mechanisms of both.

[Tealblue2]

I don’t have pmr I have ra. But your title caught my attention. I had what was named as long covid for a very long time that got worse and worse. But was diagnosed with ra in 2023. But the symptoms I have had this year with my ra are exactly those I had in 2020 and 2021 when they told me it was long covid. My suspicion is it was always ra….

[PMRpro Ambassador in reply to Tealblue2]

Why shouldn't Covid infection be the trigger for the onset of an autoimmune disease? Or make it flare if you already have one? The habit they seem to have developed of thinking there is something special about the SARS‑CoV‑2 virus must be distracting them. When Long Covid was first mentioned, I said it was probably that the severe viral infection was triggering autoimmune diseases - and we KNOW they have a wide range of manifestations that often have things in common with LC. Why are LC cases so much more "special" than the millions and millions of existing patients struggling with autoimmune disease and getting ignored entirely?

[Tealblue2 in reply to PMRpro]

I don’t disagree with you! My objection was that they told me I had long covid and dismissed my concerns and illness and told me to rest and I may or may not get better. 4 years later they are struggling to get my ra under control and it’s making me very ill.

I’ve spent 4 years trying to rest and recover from an illness that won’t cure that way.

[PMRpro Ambassador in reply to Tealblue2]

But that is what I mean - they have another set of blinkers they can use! To add to "fibromyalgia" and ME/CFS - all of which are very real but different but they appear unable to tell the difference.

[Excelsior80 in reply to PMRpro]

A friend with MS said she was hoping the long covid research around the world would help shed light on other autoimmune conditions

[PMRpro Ambassador in reply to Excelsior80]

It should do - but they have to make the connection

[Pixix]

I don’t quite fit the bill..had PMR for 4 and a half years before being very sick with first bout of Covid, in July. Now I appear to have Long Covid, & PMR is still active-ish! However, I have managed to get down to 1.5mg (taken 3 tries to get from 5mg downwards, had to go back to 5mg twice due to back adrenal insufficiency issues). Due to see Dr soon.

[Pangolin43]

Hello Claremarie.

I was diagnosed with ‘Post Covid Syndrome’ in March 2021. My rheumatologist was cautious and after many tests (including blood tests) I got Post COVID PMR diagnosis. The Covid virus had seemingly triggered something autoimmune 😳 I began 15mg Prednisolone and was relieved of a lot of the symptoms. Fatigue persisted. After 3 flares over the last 3 years I found 5 mg to be the point where it all began to go wrong again for me and on my last taper I stayed at 5mg for 6 weeks before dropping slowly again. I had a CT PET scan at 5mg which showed no inflammation. This gave me the confidence to begin to taper again. I’m hoping that my PMR is in remission. I’m now slowly dropping from 2mg to 1mg using the DSNS method on this site. Fingers crossed I get to 1mg then a cortisol test in January. I still suffer from fatigue which I guess could be adrenals, age or lingering Post COVID syndrome. However I feel very positive and shall persevere. I hope this helps.

[Hidden]

I'd like to add my experience.Last Christmas I felt great and spent a lovely time with extended family. In January of this year I went down with Covid, caught from one of the Christmas guests. I was ill with the symptoms for 10 days but haven't been fully well since. After a few months I asked the GP about Long Covid but it was dismissed so I carried on with reduced wellbeing.

In August this year I was diagnosed with suspected PMR which led to this forum and the experienced and supportive members. I have a FH of autoimmune illness and I believe the Covid infection triggered the PMR symptoms which are similar to what they called Long Covid.