PMR followed virus (not The Virus)

[Mayadill]

Dear All

I just wondered if my recent experience was similar to anyone else's? Mid March I began the symptoms of a trivial infection, the sort you assume will clear up on its own. Nose ran, a bit sweaty, malaise, a bit of catarrh on my chest, mostly clear. End of March I began to have difficulty standing from sitting. Over the following week, muscle power diminished, I developed other distinct symptoms, pain in my right shin like spikes were being drilled into it, pain across neck, shoulders and upper back like broken glass, frozen feet when the rest of me was warm, and an absolutely abnormally stinking sweat. When I couldn't stand up at all, 999 it had to be. I was investigated and diagnosed with PMR. Started on Pred and the pains began to go. Muscle power returned on its own with help from physio. But I only felt and feel normal after the viral symptoms lifted, which was about 10 days ago, no more skunk sweat, cold feet, runny nose. And I feel fine, back to normal, no side-effects from the Pred, just reduced from 20 to 17..5, a couple of twinges first thing in the morning which vanish. So maybe I don't have PMR? Maybe I should add there that I'm disabled and independent to start with. I manage life fine but my normal doesn't include heavy exercise or going out to work. The only bit of this that (I think) is clear to me is that I walked into a virus previously unknown to my body and which sent my whole system nuts.

[Legsy0714]

For starters I can say steroids are miraculous so don't dismiss PMR diagnosis. They sorted my pain in 3 hours.

Others are much better qualified to comment on rest.

I wish you the best

[SheffieldJane]

I think your analysis sounds pretty spot on Mayadill. It’s what to do next? Sometimes a virus can just be the final straw that broke the camel’s back., then PMR is triggered.My Husband and I definitely had a weird virus in early March. It would be good if that was Covid out of the way. Sounds like well controlled PMR. Start going down gently. Good luck.

[Mayadill in reply to SheffieldJane]

Thank you, both. Obviously I had to wonder about Covid and obviously I was tested in hospital, My immunology is pretty vague. I'm guessing that would have shown if I currently had it, not if I had had it, and symptoms can continue after you're no longer infectious? Interesting article in the Guardian a couple of days ago about how corona can present with far more varied symptoms than previously thought. As you say, it would be good to have had it!

[maria40 in reply to SheffieldJane]

There seem to be many people - me included - who had this virus in early March and its symptoms were so similar to Covid 19 including a persistent dry cough that I wonder whether it was an early strain. It would be good to know if we had had it and whether it has conferred any immunity.

[PMRpro Ambassador in reply to maria40]

But presumably you weren't tested? I wonder how long it will take they to realise it was in the UK far far sooner than they think. My daughter says her entire department caught something from a colleague who'd been home to northern Italy for xmas and it spread like wildfire. They joked about it - being nurses - because it did tick all the boxes and she actually asked about it but it was no, couldn't be, However, in the USA there are cases from December and someone on the forum had it - caught from famiy where it had started last November, caught from a Chinese gentleman. In the US. And it was in France in December.

I would be looking for an antibody test when they are widely available - doesn't mean you will be immune but knowing would be a good idea.

[maria40 in reply to PMRpro]

I think looking for a test of any kind in the UK is elusive. But I don't think there is yet a viable antibody test, when there is my daughter, a friend and I - all of whom had similar symptoms - will be heading up the queue, probably only to be fobbed off with waffle about capacity etc.

[PMRpro Ambassador in reply to maria40]

Yes there is - approved today! The one from Roche.

If you 3 did have it - you don't even figure on the radar for number of cases do you?

[maria40 in reply to PMRpro]

I'll try to follow that up but am not optimistic.I have a telephone appointment with rheumatologist in a couple of weeks and might raise it. Do you know where the Roche test is available? Is it in the UK?

[PMRpro Ambassador in reply to maria40]

It was approved today.

[Mayadill in reply to PMRpro]

It's all fascinating. I didn't see some members of my family over Christmas because they had 'weird illnesses'. We're all in Brighton which at the start enjoyed notoriety as the Covid capital of the south-east.

[PMRpro Ambassador in reply to Mayadill]

Yes - half of me has the "fascinating" mind set. I just watched the link Petros gave us for his story - I can watch all that, but like when my daughter's colleague died I was a snivelling heap when the NHS workers had it. Then it is far to close to home.

I can just remember sitting here watching BoJo and co going on about shaking hands with people in a hospital and how it was just like flu and his "herd immunity" insult and screaming at the TV to lock down NOW. If only - it was already there, but it would have been far less if they hadn't tried to brazen it out.

[Mayadill in reply to PMRpro]

Exactly. One of the guys at my swimming club has died of it, a lovely, lovely brave man (double amputee). Herd immunity was the pits. The herd can come close, Covidiots thinking let's picnic on the beach

[maria40 in reply to Mayadill]

That's interesting. I'm only a few miles up the road in Brighton. Perhaps we were an early cluster?

[maria40 in reply to maria40]

Sorry, that should have read ' in Worthing'.

[PMRpro Ambassador in reply to maria40]

I think it was - for a couple of reasons. I think there was a school that had a lot of strange viral infections - but too early and too atypical to be noted. Kids are different - and maybe they aren't particularly ill. I won't disagree with that, but it isn't if they get it and die - it is what happens to their parents and grandparents with risk factors. And it really does look as if there are a lot of potential they hadn't identified.

Listening to van Tamm - still leaning on "cough and fever" but they are missing a bigger picture. I really don't care about the frequency - it's the same as GCA, one thing can be the bit that triggers us to say it could be, doctors want too many factors.

[maria40 in reply to PMRpro]

As far as the children are concerned, I've just been reading that they can develop this strain of or similar to Kawasaki disease some weeks after recovering from 'conventional' Covid. A 5yr old girl has just been fighting for her life in Leeds, having developed heart complications. Thank goodness she seems to be getting through but we cannot expose our children to risk when there are still so many unknowns.

Sorry if this is off piste from PMR/GCA but it seems so vital that people should speak out about this misguided policy - an important one among so many others.

[PMRpro Ambassador in reply to maria40]

They are saying it is very rare - yet. There are so many unknowns and I just fail to understand why they are sending littles back to school. The year before they go up to senior school yes, those with exams next year yes, But the tiny ones who can't distance and here would still be in Kindergarten and playing - no way,

[Hidden in reply to PMRpro]

Kids love to put their heads together when doing things ..sending them back..🙄

[maria40 in reply to PMRpro]

My grandson aged 11 is in Yr 6 - the year before transition to senior school - and he certainly has difficulty remembering social distancing .

[PMRpro Ambassador in reply to maria40]

But at least he is big enough to be told and understand why!

[Mayadill in reply to PMRpro]

My niece teaches the tinies. She transitioned to online teaching.

She's now been told she has to do both at once, give a lesson to real live children in front of her that also works for the ones at home whose parents are refusing to send them back. So she's watching the screen and at the same time making sure no-one is transgressing social distancing, apart from anything else they might be doing in class. She says she needs a couple more pairs of eyes.

[PMRpro Ambassador in reply to Mayadill]

Only a couple????? The gubmint hasn't a clue ...

[PMRpro Ambassador]

No-one knows what causes PMR to develop. PMR isn't the actual disease though - it is the name given to a set of symptoms which are caused by an underlying illness/disorder and there are several. In our case, the PMR we discuss is due to an underlying autoimmmune disorder but noone knows why the immune system goes haywire and unable to recognise their body tissues as self and so it attacks them as foreign and that causes inflammation - and the symptoms we know as PMR.

It is thought that over the course of life the immune system is exposed to all sorts of things that stress it - infections, chemical, environmental, emotional, psychological, the list is endless it would seem. Eventually one thing is simply too much, the straw that breaks the camel's back, and the immune system rebels. It could be a vaccination - or it could be the virus that vaccine was to prevent, or it could be surgery, all things people blame.

There is some thought that there is a range of different forms of PMR, varying in length, and that there may be a reactive sort - it develops after an illness but once the illness is recovered from the symptoms go away or reduce a lot. However - once you are on enough pred the symptoms will disappear except in the early morning when the new lot of daily inflammation starts up until the pred takes effect. So that isn't really anything to go by - the test is whether you can reduce the daily dose of pred without the symptoms returning.

Most viral infections leave a mark for a while - and many viruses are unknown to the body when we meet them, that is why there is no vaccine against the common cold, also usually a corona virus, because they mutate a lot. Covid-19 is just a very successful virus and spreads very easily as well as causing a very nasty pneumonia for some.

[Mayadill in reply to PMRpro]

Thank you. The pneumonia is an important point. I'd rather assume I had Covid except for that, because it does seem to target the lungs: about 25 years ago I had a very nasty atypical pneumonia, landed up in the Brompton, leaving me vulnerable to chest infections. Because of that I was cautious right from the start of the epidemic, stopped going to my swimming club and so on. In fact ironically I'm hard pressed to know where I could have caught anything!

[mad-country-lover]

Hi Mayadill

My PMR started with a flu type virus when I was visiting the UK, one of my grandchildren had it and passed it on to me and a friend , he had flu symptom's a stinking cough and cold , I had the flu symptom's that never developed the same way.

I just continued to ache more I felt extremely unwell then could not lie down , so sat in a chair for a month waiting for my rheumatologist appointment I was then diagnosed with PMR , Preds did not work instantly for me it took several weeks , I think for me it was the cherry on top f a few years of dreadful stress. I would also say you are feeling OK as the preds are doing thire job, if you reduce them to fast you will take a few steps backwards , take care best wishes

[Hildalew]

From my layperson's viewpoint, I think you have perfectly defined PMR and the nature of Covid 19 in your final sentence. PMR is your immune system 'going nuts' and (in my layperson's opinion) the earlier symptoms were manifestations of the virus testing out other bits of your system - which were working sufficiently well .to fight it off.

[PMRpro Ambassador]

Were you tested for Covid-19 during the differential diagnosis that chose PMR?

[Mayadill in reply to PMRpro]

I had throat swabs which I assume were a Covid test. I don't know that. Things were a bit hectic in the hospital, lots of investigations, can't fault that, but not a whole lot in the way of communication. Eventually the Consultant Rheumatologist came to see me. Initially they were most concerned about my spine: I had a spinal fusion when I was 13, correction of adolescent idiopathic scoliosis. I'm guessing all my symptoms could have been caused by something going awry with that. Had to have MRI spine, which was a freaking nightmare, had me sobbing and squawking because lying flat was like being tortured! I didn't last the course, but they got enough pix. I was transferred to a small local care home for R+R and definitely had a Covid test on discharge, was told it was routine.