Similarities between long covid and PMR - PMRGCAuk

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Similarities between long covid and PMR

annie_marie
annie_marie

Hi, After watching the news today and hearing peoples experience with the effects of having "long covid" I found myself wondering if there could be any link or similar issues between PMR and what these poor people are experiencing after having contracted coronavirus. As this is exactly how I have felt for the past seven years with PMR, permanently totaly exhausted.?

I have no medical knowledge at all, but it seems that if the recovery from this virus is being helped with dexamethasone, is there a link to us all being on steroids of one form or another which is the only way we can operate.

I know, I was caring for my 93 year old father and was utterly exhausted when I had a terrible chest infection which was only helped by having a short course of steroids. Six months or so later I was diagnosed with PMR.

I'm just wondering PMR/GCA could begin with a virus not yet recognised?

I'm probably way off the mark, but just thought I would put it out there and ask the question.

Best wishes, Anne

64 Replies
oldestnewest

I like the question, but I don't know the answer. Let's see what crops up.

PMRpro
PMRproAmbassador

The long Covid things are due to the various effects of the virus in the body - which include causing vasculitis. PMR/GCA are due to a vasculitis, inflamed bood vessels. Obviously I'm a basically unpleasant person because my response to a lot of the comments is "welcome to the world of autoimmune disorders". But you wait - post-Covid patients will meet with far more sympathy and understanding than we often attract!

There have been suggestions in the past that PMR is caused by a virus. Nothing common to everyone has been identified. But autoimmune disorders are thought to be due to a lifetime of insults to the immune system and eventually something is one straw too many and the immune syte flips out: it might be the flu vaccine, or the flu because you didn't have the jab. Or an infection of another sort, or an operation or trauma or emotional stress or something environmental or chemical or ...

No one thing is to blame but an accumulation of things combined with a genetic predisposition to be more likely for it to happen. And that is why it is so difficult to prevent or work out the cause and find a treatment or, even less, a cure.

annie_marie
annie_marie in reply to PMRpro

Thanks PMR pro.

Yes, I thought it might well be a combination of everything one's body is subjected to. Whenever I've asked the direct question 'what has caused this" the answer usually is 'we just dont know' which is fair enough I guess.

I know my body had been subjected to many traumas over the years and I always said my body can't cope with anything else, and eventually couldn't. Which is why no matter how hard I try I just can't get 'better' ( same for us all I guess?).

Maybe, as a spin off from many more people having vasculitis and it being in the public consciousness we might benefit from any new research being done? Just a thought. ?

PMRpro
PMRproAmbassador in reply to annie_marie

We said much the same on the lupus forum - if it triggers them to look more closely it could be a benefit!

annie_marie
annie_marie in reply to PMRpro

Just seen the news headlines. 10pm UK. .....You are more likely to suffer from long covid if you are a woman, over 50 and overweight. Sounds familiar?

Wolski4
Wolski4 in reply to PMRpro

That is very interesting as I was very overweight (17st..11) when I had a hernia op. After this was when my PMR issues started.

whitefishbay
whitefishbay in reply to PMRpro

I guess you get what you get as you age and we got PMR.

PMRpro
PMRproAmbassador in reply to whitefishbay

Could have been worse though ...

whitefishbay
whitefishbay in reply to PMRpro

you are so right! Just had a cholesterol test -8.2. Oh, oh. Statin time.....

PMRpro
PMRproAmbassador in reply to whitefishbay

Pffftttt! They are on the red list on my notes now ...

whitefishbay
whitefishbay in reply to PMRpro

what is the red list?

Soon I will rattle: pred, levothyroxine...ugh.

PMRpro
PMRproAmbassador in reply to whitefishbay

The stuff that makes me more ill than I was anyway!!!! ACE inhibitors (proper allergic reaction, only a rash luckily), i.v. diazepam (several hours of severe atrial fibrillation, HR in excess of 200) and statin (slower at least but heading for a wheelchair!)

whitefishbay
whitefishbay in reply to PMRpro

Oh no. The GPs at my practice give you five minutes and just tell you what you are going to take. I really do not want to take statins because you can never get off them (someone told me your hair thins...I have a ton of hair). Of course, if I lost some weight that would help! If I start to feel sick I will know what it is.

PMRpro
PMRproAmbassador in reply to whitefishbay

There is little evidence that if you are female and have not had a previous cardiac event that taking a statin makes any difference - even my cardiologist admits that and makes no objection to my refusal to take a statin - 10 days of half dose some years ago was more than enough!

whitefishbay
whitefishbay in reply to PMRpro

Okay. Good to know. I eat well, exercise and don't eat fatty food. I will try my best not to have to take them.

whitefishbay
whitefishbay in reply to PMRpro

I haven't had a cardiac event (but atrial septal defect in 1971) but some ectopic palpitations.

PMRpro
PMRproAmbassador in reply to whitefishbay

Not sure what counts - cardio said atrial fibrillation didn't!

whitefishbay
whitefishbay in reply to PMRpro

Great. I hope my doctor can get on board.

Kendrew
Kendrew in reply to whitefishbay

Also meant to say that my ectopic beats and SVT's were not part of the decision making regarding the statins

Kendrew
Kendrew in reply to whitefishbay

Hi there. I also have been on statins on and off for 10 years. Came off them for reasons PMRPro quite accurately highlighted but then when tested after being on pred for a while, my overall reading was almost 12!! Off the scale and now diagnosed as hypercholesterolemia. Dangerously high, so I decided to go back on them. You can stop them easily....I've done that 3 times. I also suffer from excessive amounts of ectopic beats and echoes of SVT 's that currently correct themselves, so I'm on a beta blocker too. I would definitely not take a statin if you don't need to.

whitefishbay
whitefishbay in reply to Kendrew

Thanks for info. When you are young you have no idea of the fun ahead....

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to whitefishbay

Of course you can come off them..... i was on for years pre and during GCA - but stopped after going into remission.

My new GP wanted me back on them last year, tried the same ones I'd been on before but body rebelled, and I said no! Now, like PMRpro, my records state "no statins".

Pipalina
Pipalina in reply to PMRpro

Well I must be a pretty unpleasant person too because everytime I hear about people experiencing so called Long COVID symptoms I think "welcome to the world of ME/CFS!"

Whilst, I'm sorry for whatever suffering they are having, I'm also slightly peeved at the amount of sympathy and media exposure they are receiving.

I've had ME for over 28 years but despite the passage of time I still find myself frequently defending myself against the sceptics who still believe it doesn't exists.

There are very many overlap symptoms between PMR & ME, especially the overwhelming mental and physical fatigue and muscle & joint pain. Often, I don't even try to unravel what's causing what because that's exhausting in itself!

As you say, whatever it is that causes or triggers autoimmune disorders, the end result is that the immune system "flips out". Hence the array of similar symptoms.

Perhaps, the current focus and media interest surrounding long COVID might lead to more interests being shown in other autoimmune disorders - PMR/GCA, ME & Lupus to name but a few.

123-go
123-go in reply to Pipalina

My exact thoughts re long Covid and ME/CFS and you have my sympathy. My lovely previously vibrant niece, 50 years old, has only just been diagnosed with ME/CFS having suffered for a good number of years and now virtually bed-ridden and looked after by her 79 year-old mother. When she was finally diagnosed I thought, 'At last. Now she'll get the treatment she deserves'. How wrong was I! True about the sceptics. When I have talked to a friend about this disease I am met with a glassy stare.

Hopefully, a link will be made and endorsed by perceptive members of the medical profession and management, if not a cure, will be on the cards.

Longtimer
Longtimer in reply to PMRpro

And fatigue which has been brushed off in the past, is now going to be studied!!.......that`s when I feel unplesant!....

That is exactly what I thought when I heard the description of long Covid. Could be interesting.

Hi Anne

I have to admit after watching the News last night a similar thought crossed my mind.......

If you have ever had Influenza (the word the ‘flu really doesn’t due it justice) the Post Viral Fatigue can be overwhelming & long lasting, so l imagine this is something very similar but possibly much, much more pronounced with even a longer lasting after effect.

I know l shuddered a little at the prospect & thought we have to try even harder to keep safe & well 🙏🏼

Thoughts at 5am.......

MrsN

Aha, I hope none of us gets the Covids as we won't know if we've got long covid or not and I wonder what advice the doctors will give us regarding our addition to steroids!

I developed PMR In April after suffering a weird respiratory infection throughout January. Nurse said it was the worst she had seen so far that winter. She tried giving me 4 courses of antibiotics (3 different ones) but it was clearly Viral and did not respond. It lasted about 4 weeks. I guess too early to have been Covid...

I am doing well on the Pred. Now down to 9mg. Minimal pain but definitely more muscle cramping and need to get up more in the night!

MrsNails
MrsNails in reply to Trewirgey

Maybe not.......

Glad you’re doing OK but don’t rush now from 9mg, consider going down in 0.5mg drops.

Kind Regards

MrsN

Trewirgey
Trewirgey in reply to MrsNails

Thanks for the advice, I will do that.

MrsNails
MrsNails in reply to Trewirgey

What we aim for is No More than a 10% Drop, so once you’ve reached 9mg it’s very good practice.....

Good Luck & check out the Slow Tapers over on the Pinned Posts.

MrsN

Trewirgey
Trewirgey in reply to MrsNails

Thank you! 😀

PMRpro
PMRproAmbassador in reply to Trewirgey

No - not too early to have got it if you were unlucky. It is now clear it was present here in northern Italy before Christmas and in California in late November at the latest - someone on one of the forums had Covid in February but the chain in their family had started at a business lunch I think with a Chinese man. My daughter in Scotland had something very Covid-like in February - like everyone else in her department, started by an Italian colleague who was ill shortly after coming back to work after xmas with the family near Venice. It had escaped Wuhan or wherever it started in the autumn and just chugged around with mostly minor or no symptoms and the few pneumonias weren't recognised, and it has always been described as the old man's friend.

It doesn't get much of a mention in the UK but experts and medics are pretty sure that 80% of cases do just look like a cold or nothing at all in terms of symptoms - but they still spread it around.

Trewirgey
Trewirgey in reply to PMRpro

That is really interesting. I would love to know if I had any antibodies though!

PMRpro
PMRproAmbassador in reply to Trewirgey

If I thought I might have - so would I!

HeronNS
HeronNS in reply to PMRpro

Isn't that how the Chinese initially described it when they warned the world? An unusual pneumonia.

PMRpro
PMRproAmbassador in reply to HeronNS

That is what one doctor in Wuhan noticed, yes. He notified others and had his hand smacked for catastrophising... But I have no doubt that there were other presentations that weren't recognised as "different".

HeronNS
HeronNS in reply to PMRpro

Oh, was that the doctor who was so badly treated because he broke the news, and eventually died of covid himself? :(

PMRpro
PMRproAmbassador in reply to HeronNS

That's the story yes...

I consider I may have been touched by covid.. perfectly fine, never I'll, always full of beans. Went along to a garden get-together on VE Friday, began coughing continuously (without flem) on the Saturday, felt strangely weak and fatigued Sunday and Monday, couldn't get out of bed on the Tuesday! I continued suffering as if I'd done a really hard work-out every day for several weeks thereafter. Realised this wasn't normal after 6 weeks and called GP. Both before and after the garden soireé I'd self isolated. GP queried Covid symptoms and I said I hadn't had any. By this time I'd forgotten I'd had the cough (which only lasted a few days) and didn't mention anything about my body temperature (as I'm going through menopause) .. my smell and taste was perfectly normal too. Did I contract Covid is a question I ask myself. Is my PMR the result? Prednisolone worked a treat within 48 hours. My GP remains unsure whether I have PMR. I chose to test myself last weekend and didn't take my Pred (naughty I know but..🤷🏻‍♀️) and by Monday morning I was stiff, in pain and useless. I have a face to face rheumatologist appointment in a fortnight and keeping my fingers crossed I'll be diagnosed with PMR once a for all.. I began at 15mg. Swiftly dropped to 12mg and now on 9mg. On 8mg I find I suffer indications of PMR and become anxious. I wonder if I should mention VASCULITIS to my rheumy when we meet? Would a visit to an ophthalmologist help?

MrsNails
MrsNails in reply to Capprice

How long had you been on Prednisolone when you stopped it for the Weekend? I don’t want to sound harsh but do you know how risky that was?.....

You would not have picked up Covid on the Friday & showed symptoms on the Saturday, the incubation period is much longer than that.....

MrsN

Capprice
Capprice in reply to MrsNails

I have heard it is risky.. can you explain the risks 🙏

Capprice
Capprice in reply to Capprice

Also, what is the incubation period before symptoms arise after possible covid contamination?

Capprice
Capprice in reply to Capprice

Found the answer 😁

The incubation period for COVID-19, which is the time between exposure to the virus (becoming infected) and symptom onset, is on average 5-6 days, however can be up to 14 days. During this period, also known as the “pre- symptomatic” period, some infected persons can be contagious.

PMRpro
PMRproAmbassador in reply to Capprice

Here they say 2-14 days - so it can be quite fast.

MrsN has explained the adrenal conundrum well - although a couple of days not taking your dose is probably not very risky don't try it for longer without medical supervision! You can become quite ill, especially if you experience something realtively sever - an accident, bad infection or illness or emotional stress.

Don't suppose you know if anyone else at the VE Day party became ill?

Capprice
Capprice in reply to PMRpro

Thank you.. I did look into it but no one had shown symptoms and therefore no evidence via a test etc. Really appropriate your time x

MrsNails
MrsNails in reply to Capprice

When we take steroids over a short period, say for an asthmatic with bad asthma or a Chest Infection they will prescribe approx 30mg per day for a week & that has little or no impact on the adrenal system as the body needs additional help to deal with the inflammation.

However, once you have been on Steroids for approx 3weeks the Adrenal Glands notice that they don’t need to produce Cortisol as the body is getting an artificial boost everyday, so they stop producing Cortisol & ‘go to sleep’ that is why we have to taper our doses very gradually.

Even for up to a year after we stop taking long term steroids if we have a sudden need for the adrenal glands to kick in they simply can’t, as they have become ‘lazy’ an additional need can be something like a trip to the dentist & certainly a tooth extraction, a severe cough/cold, an accident or a sudden stressful situation, the body cannot cope.

I have a couple of episodes when l have forgotten to take my Pred & by lunchtime l certainly know about it, by becoming sweaty, extremely weak & a feeling of dread/doom, it is not nice.....

PMRpro would you have a link or a more scientific/medical explanation for Capprice Thanks. I'm just going on a Zoom Call for my PreDiabetes Course

MrsN

Capprice
Capprice in reply to MrsNails

🤗thanks so much x

HeronNS
HeronNS in reply to Capprice

And this happened to me: I was at a very low dose of prednisone about three months ago when I had a stupid accident and hurt my knee. I told them at the hospital I was on pred but they seemed disinterested. I noted myself that the next day, although I had not missed any pred doses, that I was very shaky, had such a dry mouth I could hardly eat, and felt generally more unwell than one would have expected. I hurt myself but nothing was broken. At first I put it down to lack of tea (and food) for the nine hours I was kept there, mostly waiting to see the doctor, but later I realized I had had quite a shock and probably was also experiencing some mild but unpleasant adrenal symptoms. Nowadays if I forget my small dose of pred (2 mg) it's not increasing pain which gets me first, it's that feeling of shakiness.

Capprice
Capprice in reply to HeronNS

Wow, so definitely something I will be aware of in future! My GP has now, after several requests, posted me a blue steroid card to carry with me. I shall certainly show it, if necessary, as it clearly explains the seriousness of the medication to practitioners less advised.

This should probably be under a different topic heading but my GP has recently added Amitriptyline to my regular Pred prescription. It is meant to help me sleep better however each morning I wake with a real twitch and both my head and neck kind of tremble for a few minutes ...very weird!

MrsNails
MrsNails in reply to Capprice

Hi Capprice,

What dose of Amitriptyline & what time do you take it?

MrsN

Long time Amitriptyline Taker....

Capprice
Capprice in reply to MrsNails

GP stated 10mg on prescription which I took at 8pm however due to breathlessness (particularly with mask on) light-headedness, fatigue and general lethargy at work I began to feel quite anxious throughout the day.. I asked GP to write me a Fit Note so I could reduce my hours to 3 days a week. She has written me one covering me for the next 5 weeks but suggested I increase the Amitriptyline to 30mg whilst reducing my Pred by 10% every fortnight 🤷🏻‍♀️

MrsNails
MrsNails in reply to Capprice

Wow! 30mg of Amitriptyline is quite a heavy dose & while reducing at 10% is ideal, not every fortnight unless there is a very specific reason?.....

I have taken 20mg over longish periods both before PMR & since, l had a very bad shoulder injury & Amitriptyline works very well for shoulders particularly.

Amitriptyline can have quite a sedating effect & can leave you with a ‘HangOver’ effect the following morning, that’s why l was asking what time you were taking it, l take mine between 7pm/7.30pm & am currently on 20mg.

I think you may find it hard to get going in a morning following 30mg, so l’d increase it by 10mg to 20mg to see how you feel & try it on a non working day the following morning before you go to 30mg

But what l’d like you to do is copy your Post above into a New Thread, l’ll copy my answer too, slightly edited as l feel you need more advice & while PMRpro will see it, not many other’s will necessary follow a post on another subject & l am a bit concerned, please also include how long you’ve been on Pred & what your current dose is......

Thanks

MrsN

maria40
maria40 in reply to Capprice

I'm not sure but my daughter, grandson and I had a strange flu like infection in February/March. It started with a dry cough and continued with fatigue and coughing for several weeks, though grandson (11) recovered in a few days. My daughter still coughs more than is normal.

I'm one of those randomly selected to take an antibody test (Imperial College and Ipsos Mori) and I'll be interested to see what it comes up with. There is a caveat in the notes which says the test is not 100% accurate at an individual level and the study is designed to determine how many people in England have been infected - not quite sure how this works but I hope it can show me whether I might have had something more than flu.

Trewirgey
Trewirgey in reply to maria40

That will be really interesting! I keep hoping to be selected one day too!

HeronNS
HeronNS in reply to Capprice

I went to my ophthalmologist (my regular eye doctor) after I'd been on pred for a few months because I was concerned about the possible not-very-common side effect of increased eye pressure. Possibly my eye pressure had been higher. It was high enough that although he didn't prescribe drops at the time he brought me back four months later for a followup. At that point my pred dose was lower and the eye pressure was also lower. As I tapered pred, slowly I should add, the eye pressure eventually became normal. At that first visit he talked to me about pred and GCA and, had I not already done a lot of reading, would have learned a great deal from him - far more than my doctor ever mentioned. He checked my eyes thoroughly for any signs of GCA . Although for my entire adult life I'd had my eyes checked every two years he says as long as I take any pred at all, even my small current dose, I should be checked annually.

Capprice
Capprice in reply to HeronNS

That's really helpful to know! As I don't need glasses I leave years between eye test visits 😳

I shall be organising a test asap as my left eye (mostly when I'm feeling tired) does feel different.. as if there's something small but irritating lodged under my eyelid??!!🤔

I’m thinking all the same thoughts. Do I have PMR/GCA or is it after affects of covid? Did I have covid and that caused these symptoms? I’m waiting for my antibody results - cat scan and biopsy results to see. In the mean time my Drs don’t think it’s from Covid. But my neurologist was questioning it? So confusing. I also read there was a high rate of PMR during the last pandemic

PMRpro
PMRproAmbassador in reply to Bro-

Well I suppose a first step would be to get an antibody test - if it is positive you have an answer. If it negative - less likely but not impossible.

Capprice
Capprice in reply to Bro-

Whilst trying to determine what I 'wasnt' suffering from (in order to satisfy my GP that I do have PMR) I was asked to attend a covid blood test. I did. They lost my sample or results during the process so I never found out. Too late now!

HeronNS
HeronNS in reply to Capprice

Frustrating!

Interesting. Although I have only been diagnosed very recently, I am now thinking it actually all started after my 2018 flu shot. The pains came on exactly, almost down to the minute, 24 hours after the shot, and I remember being amazed at the punctuality. However, what I thought were just regular side effects, never got better, and I ended up in ICU a month later, with severe respiratory distress, which was eventually diagnosed as Cryptogenic Organizing Pneumonia, which is an autoimmune condition. This has flared up many times since then, each time starting with those body aches and pains. I eventually weaned off Prednisone back in April this year, and those withdrawals just kept getting worse, though I didn't realize exactly how bad, until they put me back on 50mg Pred for the pneumonia, and it all just melted away. This is when I was diagnosed with PMR.

As soon as Covid started making the news earlier this year, I have been commenting that it is so similar to my adventures with autoimmune disease. It has left me wondering if there is some connection between immunizations and autoimmunity. After almost 40 years in the medical field, I have noticed a that autoimmune diseases have increased along with availability of immunizations. I have never been an antivaxer, but now find myself asking questions.

A close friend is a Covid long hauler, and she also notices similarities in our conditions, though there are some differences too. I mentioned the similarities to my pulmonologist, who muttered something about it just being a typical immune response, as she walked away.

So, it seems there are no clear answers, though I suspect the Covid club will get plenty of more research $ than the PMR club.

PMRpro
PMRproAmbassador in reply to Qbits

It is quite likely that for some people the vaccine and its effect on the immune system is the final straw that breaks the camel's back so the immune system goes haywire and doesn't behave as it should. However, you can't say "the vaccine is dangerous ..." because it could just as well have been the flu you caught because you didn't have the vaccine that tripped the switch. Covid is a very clever virus and can get into all sorts of organs and systems - and the responses it creates are severe.

Your doctor is quite right - it IS a typical immune response. But Covid has made it newsworthy.

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