LONG COVID AND PMR/GCA

[piglette]

I was interested to see in this week’s BMJ that long Covid patients are struggling to get their voice heard above doctors a situation that risks “structural iatrogenesis”!! I personally find there is a similarity in symptoms between long Covid and auto immune diseases. So we are probably in the same situation.

[SheffieldJane]

😵‍💫 Then there would be nothing wrong with any of us unless it was entirely our own fault.

[PMRpro Ambassador]

Comments have been made that Long Covid and PMR have many similarities - certainly vasculitis must play a part ...

I have to say I am a trifle cheesed off at the attention that was being paid to first 1 and then 2 million patients with Long Covid when 4.5 million autoimmune patients have been ignored for years ...

[piglette in reply to PMRpro]

Absolutely agree. Some lady with MS was on TV saying the same thing and that she was stuck long term with the symptoms.

[Stanca in reply to PMRpro]

Interesting you say that PMR pro. I have been diagnosed with PMR/GCA following blood tests last May (2020) but previous to that I had Covid in early March : in fact I didn’t know I had had Covid and it was only later on that I discovered it from doing antibodies test. Nobody saw me at the hospital of course because of Covid and so even my diagnosis was done on the phone and on the basis of my symptoms and High inflammatory markers. However I was most interested when I was explaining my symptoms to a friend of mine who is a GP in northern Italy ( I was then hoping to be able to travel to Italy as I am Italian and do some further tests but that wasn’t possible either ) He asked me if I had had Covid . I didn’t think I had ( my Covid symptoms were mild ) and was surprised by his question . He explained to me that in Italy - where Covid had started much earlier than Uk - they were beginning to see many cases of very odd symptoms in patients who had had Covid, including fatigue and generalised pains and they were beginning to put that down to Long Covid . I developed Covid in March and PMR immediately after in April and May . So thee could be some overlap there: “was it long Covid or PMR ?” . I still don’t know. Maybe it makes no difference anyway.

[PMRpro Ambassador in reply to Stanca]

I've wondered if you were Italian ever since I saw your name! Very suitable for PMR!

I sat here shouting at the UK TV telling them to shut down in early March - it was so awful here and it was crazy for anyone to think it wasn't going to spread everywhere. But they just thought it was Italian inefficiency. After over a year they still don't understand. They also picked up the effect in children here long before the UK.

Where are you from?

[Stanca in reply to PMRpro]

I am from Rome but have lived in Uk for 40 years . My husband is English . Yes you may have guessed (or you know ) “stanca” means tired

[PMRpro Ambassador in reply to Stanca]

Where is your GP friend in northern Italy? I live in Alto Adige - but a German-speaking valley

[Stanca in reply to PMRpro]

How funny is that ! . My GP friend is in Modena . He saw so many Covid patients and many he said had my symptoms . But PMR is also something my mother had and her sister also . So none the wiser !

[PMRpro Ambassador in reply to Stanca]

I have a medic friend from Bari who has just ventured north to Modena to do biochemical medicine training! Bless him, he is so excited at the far north!!!

[Lauterbach]

Hi Piglette the ME/CFS community are also watching the Long Covid syndrome very closely as it has many similarities to CFS. They are hoping that the research into Long Covid may shed some light into their problems,

[piglette in reply to Lauterbach]

My mother had ME and, like PMR, long Covid has a lot of similarities. In fact like most auto immune diseases. I wonder how soon they will latch on to the idea that the Covid virus could trigger an auto immune type disease called Long Covid.

[Seraphina56 in reply to Lauterbach]

Having suffered for over a year with post viral (shingles) fatigue (diagnosed by a consultant last summer) veering into chronic fatigue on top of PMR I have been getting increasingly fed up with the attention long COVID is getting, like special clinics, and heaps of research. I, and many like me have had absolutely no help from the NHS despite feeling utterly weak and despairing at times. No monitoring, follow up, management plan, advice, support, referrals, and definitely no treatment with precious little research. Not even a leaflet!

[Lauterbach in reply to Seraphina56]

Hi Seraphina. A close friend has lived with severe CFS for many years now and, like you, is completely hacked off with the lack of attention and support that sufferers have been given by the NHS. Even to the extent of CFS being queried as to it's actual existence. However, with the all the attention and research now being focused on Long Covid she and her support group are hoping that, as the symptoms show similarities, there might just might be a spin off that helps them. Having seen the issues that my friend has had to live with you have my sympathy and the realisation of how frustrated and let down you must feel

[nuigini]

After having a mild case of covid last February I thought I was headed for long covid because of the on-going symptoms. When I realized how similar the symptoms were to PMR I decided to increase pred by 5 mg in case it was a flare. Sure enough, that dealt with it. So many parallel symptoms! I'll take the PMR, thank you. Long Covid is really scary.

[ritter]

Hi Ritter here I had jab on 1 Feb. And 3 weeks later got PMR back after 6 yrs and GCA doc said related to AZ jab for definate. Back on preds after been healthy for 6yrs so do be careful every one

[PMRpro Ambassador in reply to ritter]

But not related to the AZ vaccine because it was AZ as opposed to Pfizer or Moderna - but because it is a vaccine ...

[tangocharlie in reply to PMRpro]

Interestingly, on Facebook groups for PMR there has been a massive influx of newly diagnosed people who reckon they got it from the Covid jab. I wonder if there are people looking into it

[piglette in reply to tangocharlie]

I would not put money on it that they are!! Cynic that I am.

[tangocharlie in reply to piglette]

Of course it could be that these people had symptomless Covid without knowing, before they had the jab, and it was the Covid what done it? We shall never know. except they did somehow eventually realise the shingles jab can cause PMR didn't they? BTW I'm certainly not an anti-vaxxer, I'd have had it regardless of whatever side effects they said. I took a big risk with all the allergies I have. I don't feel 100% safe against Covid but safer than I was before and that's a big quality of life improvement

[piglette in reply to tangocharlie]

I do agree that either Covid or the vaccination might have been the tilting point to getting PMR. I still feel a bit alien going out into the big bad world again!

[tangocharlie in reply to piglette]

Apparently so I'm reliably informed that Andrew Marr has just got Covid again even though he had it before and is now doubly vaccinated, reckons he got it from reporting and interviewing politicians at the G7 summit in Cornwall

[piglette in reply to tangocharlie]

I heard him saying in person he had caught Covid while at the G7 conference. I wonder how many of the attendees had it. Weren’t they supposed to have been tested.

[PMRpro Ambassador in reply to piglette]

bbc.com/news/health-57640550

He took 2 lateral flow tests that were negative - which was probably what they used for the conference.

And the footy is going to be another Cheltenham/eat out to help out event ...

[piglette in reply to PMRpro]

But who gave it to him? One of our wonderful G7 colleagues?

[PMRpro Ambassador in reply to piglette]

Could have been anyone couldn't - and how many did HE give it to?

[piglette in reply to PMRpro]

The G7 delegates?!!

[HeronNS in reply to tangocharlie]

I'd be feeling a lot safer if I'd had more of a reaction to my second Pfizer shot. I wasn't aware of any reaction at all with the first one, but there could have been a sore arm completely overshadowed by my flaring PMR condition at the time. This time I did have some minor pain at the injection site, but absolutely none of the other side effects which are supposedly common with second shot. In fact I feel uncommonly well. It was 76 days wait between vaccinations. Both times I've had to be at higher doses of pred than since my first few months with PMR.

[PMRpro Ambassador in reply to tangocharlie]

I agree with piglette - probably not!!!!

[tangocharlie]

My rheumatologist (an expert in PMR) acknowledges Long Covid and Long PMR are very very similar ..... I am optimistic all the research currently done will help us automimmune peeps too

[PMRpro Ambassador in reply to tangocharlie]

We can but hope ...