Has anyone had Covid and been left with a big flare up of PMR pain?
I had the antivirals which stopped me from getting worse and am now testing negative. But I am in so much (scary) pain with my hips and lower back - been making me yell out when I move. I was on 5 mg before getting Covid but had to go to 10 then 15 then 20 mg of Pred in the last few days just to be able to walk. I managed to get to the doctor today (one I have not seen often before and I do not like but she was the only one free) and after much discussion she reluctantly gave me an injection, and she said to stay on 20 mg for a few days until the pain calms down.
But then she started - like I knew she would - “How do you know that what you have is PMR? Six years is too long to be on steroids. Was your Rheumatologist happy with you being on 5 mg after 6 years? He seems to be overly generous with these drugs. Are you really trying to reduce? What is the lowest you have got to - you should be off them by now? 53 is too young to get PMR anyway so why did he diagnose that? Your last blood tests didn’t show anything like PMR. When was your last Dexascan? Who is monitoring you? How much exercise are you taking?”
And so on in that vein. I contradicted her about the age thing and got raised eyebrows. And from then on a lot of eye-rolling. She is sending me for a dexascan and blood tests and increasing my HRT and then wants to “do a review”. Dreading it! My rheumatologist, Dr Hughes, passed me back to my doctors when I had got to 5 mg and was doing ok - if she tries to take me off the Pred I will ask to see him again. It just takes a long time to get an appointment.
Still in pain and feeling very low. 😞
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SusyTe
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I’m not surprised you’re feeling low! ☹️There’s a time (if there is one) and a place to read the riot act to a patient, not when they are at rock bottom.
Thanks - yes - I just knew she would - I had hoped it would be one of the nicer and more knowledgeable (about PMR) doctors but I was desperate. At least I got the injection but I think she has got the bit between her teeth now and I have a battle ahead. I wish doctors could be updated about PMR. I don’t want to have it and I don’t want to still be taking steroids but have no choice! I told her I was using the DSNS method and was trying but by that point she wasn’t listening. 🙄
Do you have a good practice manager? I have a similar problem with a doctor at the hospital and asked my GP what to do about it. She said I should request to see someone else as the professional relationship had broken down. They'd probably get on well together - this one told me to "avoid stress" 5 days before my husband died!
I don’t know of any Practice Manager. 🤔 What I do know is they are not taking on any more patients because they are overwhelmed so I hesitate to complain too much in case they get rid of me. I am going to look into changing the review appointment to another doctor.
I am so sorry to hear about your experience with that uncaring and insensitive doctor!
If you are in the UK it’s worth checking your practice website where you will find a list of the staff/GPS who belong to your practice. It’s unlikely that there is no manager but in any case there will be a senior partner (GP). You can talk to either. It is perfectly reasonable to explain that there seems to be a clash between rheumy and GP leaving you confused and unhappy, outlining your situation. They won’t chuck you out. However, at the moment your current GP is doing the right thing in terms of injection and tests - perhaps wait until you get the results, discuss them and if you are unhappy with the next steps she outlines refer to the others as above. She should not have undermined her colleague in the way she did. Big gentle hug xx
Thank you - I will have a look. I am not seeing her again for the review until the 9th May, by which time I hope I will feel stronger and in less pain so can manage the appointment better. She certainly has an unfortunate manner - I can’t change that but I can change how I react to it. And thank you for the hug ❤️🫂 x
I would have said I'll ask him, and tell him what you said about the drugs....Try to see someone else if possible, if you can say I'll wait til another doctor is free..... Not easy I know....
I was in so much pain it was all I could do not to cry while in there with her - I couldn’t even sit down. So was not feeling very strong. She has already booked me in with her for the “review” next month.
It makes me so angry what some of us have to battle with....I have been there, but with a Rheumy....thankfully now have a brilliant one. Maybe you could be too ill for the review??....
If you do have to see her, ask her outright, so what is your diagnosis then?......so when I see Dr Hughes again we can discuss where I go from here.. .
I'm in that challenging mood today....can you tell?
Yesterday I went for my 4th jab, to my local "Walkin" ...GP had text me twice last week to get it done....traffic warden asked me if I had an appointment..(I was armed to the teeth with evidence)...I said no, he said well you need one, to which I replied, I'll let the vaccine centre decide that....I got a look!.......went in...no problem got my jab!...
OK, but don't leave it too long. A number of us here have learned that we must advocate for ourselves and the first time is the most difficult. When you've done it once the next time is easier 😉.
I remember going into see my rheumy after my GP fast tracked me as I was having such a bad time. I burst into tears when she asked me how I was! She was so comforting and handed me tissues. It was at the time when I was having real problems with a very painful and swollen knee. She gave me another steroid injection and advised increasing my steroids until I felt ready to reduce. The next time I cried on her was just after my Mum died last year. Unsurprisingly I had a major flare just after the funeral (I haven’t had the strength or mental resolve to write about it on the forum yet!) Again she was wonderfully sympathetic and together we made a plan as to how I moved forward. I like her a lot, she does listen and she is empathetic as all our doctors should be. She doesn’t claim to have all the answers as I do present with some odd symptoms for PMR so think I’ve become one of those people who’s morphing into PMR onset RA after 6 years since diagnosis.Don’t lose faith, keep your resolve and just cry…….it’s much easier to let it all go! Good luck.
Oh you poor thing. Did any other painkillers help? Is there a way to report your symptoms to what I hope is an already existing database tracking long covid? You may have some tension in your back which is making pain worse. Heat can sometimes help but I've recently found from personal experience (not covid related) that, depending on the cause, which nerves are involved, etc, heat can have the opposite effect.
I tried extra strength Nurofen, Voltarol gel and extra strong paracetamol but nothing touched it. I have got a hot wheat pad wrapped around my lower back/hip area which soothes it a bit so long as I don’t move. I had not thought about adding my symptoms to a database about long Covid - I didn’t know there was one. I did do an LFT this morning which was negative and have reported that. I was wondering if anyone else’s PMR had flared up badly after Covid - or maybe it was the Antivirals. I was doing ok before I got Covid, although was having trouble getting below 5 mg.
How much nurofen? You need an 800mg flooding dose as a basis. You can also take paracetamol at the same time (though I find it a bit chocolate fireguardish on its own).
I also have a few lignocaine patches and they helped - though as far as I can tell, the UK is the only country that doesn't let GPs prescribe them or sell them OTC! Rod Hughes might help get some of them.
Ah, thank you! Just read the small print and the 256 ones say Sodium Ibuprofen (equivalent to Ibuprofen 200 mg) and the 342 ones say Ibuprofen Lysine (equivalent to Ibuprofen 200 mg) - you learn something new every day! Sorry to mislead. That is a bit naughty of Nurofen in my opinion!
Mmm - but YOU were being misled weren't you? Just get the cheapest from a supermarket! The stuff is all the same - you are paying for the name with nurofen. Infuriates me ...
I don't know if there is a way to report ongoing symptoms. There seem to be a lot of YouTube videos (by doctors) on how to manage the various symptoms of long covid. I watched this one, which emphasises being very careful when you have pain post covid not to overdo things, but to restart exercise very slowly and not attempt to push through pain.
Hi. I am just over covid and had paxlovid anti virals. I am a bit more sore than I was before covid. When I spoke to my go regarding my pred prescription he said I was supposed to tell them I had covid as they may have doubled my pred dose while I had covid. He said we’d spoken about if i was unwell with anything else I should get in touch. Of course I have no memory of that. Perhaps that might have helped us in hindsight. Trying to speak to a doctor just now is a nightmare- so I’m always reluctant to try.A review of things is a good plan, but I do empathise with your fear and loathing at the thought of it.
I know! There is one doctor in the surgery who is up to speed on PMR and lovely, and respects Dr Hughes - but he is always fully booked up - no surprise there. This morning was an emergency - I just couldn’t stand the pain anymore and was getting a bit scared. Of course this blasted woman has now got me thinking - what if it IS something else? 🙄 Hence asking the question if anyone else has had a bad flare up immediately after Covid.
Long Covid is often very similar in many ways to PMR. But a severe infection/illness will always poke PMR. I have similar flares to yours WITHOUT being ill!! I went to A&E with a similar experience 3 weeks ago - no idea what triggered it. They weren't much use but it also got me to my rheumy and what he did worked!
And I've asked him a few times - is he sure it is PMR I have. And he is convinced enough. We just have a slightly different version.
In an emergency I usually take 800mg ibuprofen and sit against a hot water bottle but this last time was too much for that after hatching the whole previous week. I'd been having NSAID infusions but the weekend meant 2 days without. Bang! But I have now had 2 weeks of 800mg ibuprofen before bed every night and tramadol in the morning which has let me function. Not keen on trying without the tramadol - though wasn't too bad yesterday, the really sharp, scream out loud, pain has gone, just a grumbling ache if I walk or stand much. Still cannot lean forwards. He considers ibuprofen OK as long as I take famotidine or a PPI as well.
So sorry to hear you are going through this but thank you so much for telling me what you are doing. If I can get rid of the scream out loud pain that would be wonderful.
You poor thing, I feel for you. Many of us have been in similar challenging situations. It is so wrong. I appreciate surgeries are under pressure but some doctors dont seem to be able to cope and end up losing sight of why they trained.
I would be inclined to ring every morning to get in with the doctor you want, then cancel the one you dont. I hope you stabilise. I would also be inclined to see your Rheumy post Covid as things have changed.
Thank you. I will try to see another doctor and also email Rod Hughes. The surgery is overwhelmed - if you call you are always put into a holding pattern in a queue of at least 20 if not more, no matter what time of day, and unable to book appts online anymore.
Yes. Its difficult. Same with my surgery in the northwest. When you do get in for a face to face they are so stressed and clock watching its unbelievable. I have recently after 12 months decided to pay private to see a Rheummy. Just to see the whites of his eyes and not be against the clock. Best of luck. x
A DEXA scan is good. They are getting hard to come by. Your doctor started off well and then began dissing other doctor’s decisions and worrying you about a situation that is no fault of your own and this is depressing. Aargh! You are not too young and none of this is your fault. Nobody wants to stay on Pred, they bring problems and are not fun to take. No amount of nagging will change anything. A bit of encouraging and exploring workable solutions in an empathic way is far more effective. In my view you are doing ok. You’ve followed a similar pattern to me and have got down lower. It maybe that we will always need a little maintenance dose like Prf. Dasgupta decides is best to keep some patients well. Maybe once this hitch is over it might be worth seeing and Endocrinologist about your adrenal function. This stage can be really symptomatic and tough for some of us.You will also have a better idea about your bone health after the DEXA scan. This is about having an eye on getting fit and well. This is what I am going to do, perhaps being a little more receptive to advice as long as it is coached in non critical terms.
Thank you - I really appreciate your reply. I thought about things overnight and agree - she was actually trying to be helpful in having me checked out with the Dexascan and blood tests and increasing my HRT but then went down a rabbit hole with lack of knowledge about PMR and didn’t like my correcting her so it all went pear-shaped. I am still going to contact Dr Hughes’s PA today to get his views. The pain has eased off somewhat, thank goodness, so I feel stronger and more positive today. I will look into seeing an endocrinologist, thank you.
I so appreciate your and everyone else’s support and input - this forum is life-saving. Thank you again. ❤️ X
I was diagnosed with PMR at 54 so defo not too young to have it at all. I am now 57 and have never managed to get below 10mg so goodness knows what she would say to me. I had covid last year in July before antivirals but after two vaccines. I had a massive flare which never got under control as Consultant kept just saying carry on at 10mg but tried to add MTX later which I didnt tolerate. Thanks to people on this forum I had the best week in months last week but I am on 15mg and had to go up to 20mg first to get stable. I am now coming down very slowly. For me the back pain was the worst side effect of the flare as well not the thigh leg pain or my arms. Hang in there and believe in your self and that you know whats going on.
Thank you for your response - I am so sorry you are going through this but you made me feel less alone, like the other lovely people on here. I hope things improve for you. ❤️ X
First time contributing to the site. I am on 7.5 pred. Just got Covid and presently waiting for a decision on antiviral medication. Having read your post about a flare up of pain I am concerned as to whether to have them if offered.
As you only on 7.5mg you may not be offered them anyway….and are you on any other medication? The letter only says you may be offered the drugs, it’s not a guarantee… there will be a discussion with the person contacting you. But you don’t HAVE to accept them, it depends on how you feel with Covid and if you have other issues.
Thing is, I don’t know if it was the anti-virals or Covid that has given me this awful flare. All I can say is that I do feel they stopped my Covid symptoms from getting worse. X
I think if you get Covid you have far more to worry about in terms of its effects than any of the antivirals. It does all depend on how ill you are with it and a lot of other factors. It is a bridge to cross when you get to it.
Hi, sorry that you haven’t had the right support from doctors and I hope the flare calms soon. I’m in my second week post covid and also have a lot of pain affecting my walking, hips, feet mainly but arms and shoulders too. Think with any virus it’s likely to cause some degree of a flare. Hopefully you’ll be through the worst soon .
So sorry to hear that you are in pain and that you had to deal with the lack of sympathy from the GO. I've had a similar experience in the past. To be fair to her she is probably not up to speed with the latest research and is more concerned of what the steroids may be doing to your bones. I last tested positive over 10 days ago, and took 20 mg for 5 days as advised after the mAb treatment. However, I am still experiencing quite bad fatigue and can't walk more than 1.5 miles without doing the pred plod and my hips and thighs aching. The lack of sleep of head sweats are more sever too. It should get better, but the advice is that one pace oneself and not overdo it.
Good luck I do hope the increase in pred for a few days helps you.
Would you expect to be recovered any more 10 days after a dose of real influenza? I've had real flu once - I was much younger and reasonably fit and it was a month before I felt even halfway human. Covid may have mild symptoms at the time - but you don't know what it is doing out of sight and even people who had very mild Covid are developing Long Covid
So sorry Suzy. I also had a big flare up after a bad bout of Covid. I always suspected that a flu injection a few years ago was the first trigger of PMR so I suppose I should have expected it. Hope it subsides soon.
Can I just say a huge THANK YOU to everyone who has so kindly responded to me with support, advice and information. It means a lot and I appreciate it more than I can say. From being in a bad place, now with your help I am facing today with renewed positivity and strength. You are all wonderful. ❤️ Xx
Just got a call from Rod Hughes’s department - they said to stick on 20 mg for a few more days. And if I am not happy with the doc then to get a referral back to him. 👍 And he is now Professor Hughes rather than Dr Hughes now apparently. ⭐️
Ooooh - I THOUGHT I'd seen something referring to Prof Hughes. And Sarah Mackie is an Associate Prof (whatever that is!) . PMR names are going up in the world
You have my respect and sympathy! I was in tears last week reducing on alternate days from 6mg to 5mg of Prednisolone. I even threatened to get a one way flight to Switzerland! Do go to Backintelligence.com. You will find lots of helpful advice. It won't cure your pain but it will make it more bearable.
I had Covid 3 weeks ago and could feel the familiar pain in shoulders/neck/hip girdle returning….I’m on a slow reduction (since February) and was tapering 1mg per month, I was on 3mg but at the weekend I went back to 5 (where I was January) and it seems to have calmed it down quite a bit. I felt like I’d stepped back a year and was filled with dread, pain, malaise, nausea….really hoping it’s back under control again and hope you are able to get back to where you were without too much difficulty.
Ah, sorry to hear that. I hope yours gets better too. Mine has improved today, thank goodness. But still taking 10 mg until the weekend then will try to drop back to 5 mg. 🤞
I've only just read your post, what an awful experience! Covid in early 2020 started my PMR, I'd never heard of it so been on Prednisolone ever since, now on 5.5mg. My doc isn't concerned at all. I've never been to a rheumatologist, and I don't really want to after all I've read about some of them. I saw a really interesting article online called An Update On Polymyalgia Rheumatica, tap Full Text Links.
Yep - have squirrelled it away -and like the comment -
“There are no validated guidelines on the optimal duration of GC therapy in PMR and data available in studies are not consistent. In a study by Healey, only 30% of patients were able to stop GC therapy and remain asymptomatic within 2 years of follow-up while only 2% were able to stop GC completely within 6 months [54]. In a meta-analysis by Floris et al. including 21 studies eligible for analysis, 77%, 51% and 25% were still on GC after 1, 2 and 5 years from diagnosis“
I take 7.5mg Methotrexate a week in tablet form (plus 7mg Prednisolone daily) changing to sub cut this week. My Rheumatologist said he may decide to increase but only up to 10mg.
It is much more usual in the UK for them to use 15-20mg - and of course that entails more risk of side effects. That is what I failed on when I tried it.
Possibly but I felt so ill I didn't want any more of it!! I have always done well with just pred, just I need a lot of it. But I have no identifiable adverse effects.
As is so often said here we are all individuals and what works for one may not suit someone else. You are fortunate to have no side effects from Pred. PMRpro.
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