PMR Flare up after Covid?

[Jcarling]

I am 67 years old and was diagnosed with PMR in 2016 and have been on Pred since then. I have managed to taper to 3.5 mg and whilst I’ve tried to get below I’ve not been successful and so have accepted I need to stay at this dosage to more or less live without symptoms on a daily basis and do the activities I want to do. I was doing really well with yoga practice daily and even did the Cancer Research run 56 miles in February challenge without it seems any damaging consequences. Then in April I got covid and that was ok not too bad, but after that got a really bad bacterial chest infection and that took 3 bouts of antibiotics to even start to clear up. This took about 8 weeks to improve, during which time I felt very poorly. It was after this I started to notice muscle pain in my arms and put this down to post infection and generally being under the weather. It got worse so won’t to see my GP who did blood tests which showed a cpr of 1.3 and erythrocyte sedimentation rate of 5. He said it can’t be the PMR and said the pain must be coming from my shoulders and so offered me injections into my shoulders to alleviate but also said it would act as a diagnosis which if didn’t improve he would do further tests! Whilst I’m happy to try the injections I was not happy with his attitude to considering this a PMR flare up and typically he said I should try to get off the pred!! A few weeks further on now and the level of pain in my arms has worsened and in addition has started in both of my hip and thigh muscles and I am now convinced this is PMR flare up as I am struggling to move when I wake up. It improves in the late afternoon but I am noticing break through discomfort now before I go to bed about 10:00 pm. I am now sure this is a flare up and shocked it can still happen after 6 years. Should I up my dosage of pred for a few days? Any advice from you lovely people out there is greatly appreciated! 🙏

[PMRpro Ambassador]

PMR can flare up any time - you are never really free of it, it may go into remission (unlike most other autoimmune disorders) but the propensity to reawaken is always there. I know several people who have had it more than once, with long clear periods between, and with many years free after the second bout. And since you have been unable to get under 3mg it does suggest you are one of the group Prof Dasgupta told us he keeps at about 2-3mg longer term as it reduces the incidence of relapses. However - if the immune system is poked hard enough, it can increase the activity of the underlying disease process and the symptoms return. Covid is a pretty hard poke! If you look at the literature you will also note that Long Covid seems to bear a lot of resemblance to various autoimmune disorders with inflammation featuring a lot.

"He said it can’t be the PMR and said the pain must be coming from my shoulders"

Well duh!!!!! One of the likely sites of PMR is the shoulder girdle - and since you mention shoulderS PMR is more likely than injury which is more likely to affect just one at a time. The blood markers are also very unreliable - they can lag a long way behind symptoms (which is why symptoms always trump lab results) and in some patients on pred, however low the dose, they just don't rise in a flare for some reason.

I know you don't want to hear this but I suspect it isn't a case of upping the dose for a few days - you may need to readjust the dose entirely. I would start with trying 5mg but somehow I doubt that will be enough. If it isn't or if you feel really sore at present - what I would do is try 10mg for a week and then drop straight back to 5mg and see if that is then enough once the accumulated inflammation has been sorted out.

[Jcarling in reply to PMRpro]

Thanks for your reply I really appreciate it. I think that because it’s bilateral it’s definitely PMR but it caught me unawares because I’ve been pretty stable for so long. I’ll up my pred to 5mg to see what relief it brings and if not enough I’ll take your advice and up to 10mg. I feel like the tin man in wizard of ox at the moment I need a good oiling!

[PMRpro Ambassador in reply to Jcarling]

Yes - recognise that feeling too!!! It is perfectly possible that the PMR was about done - but the symptoms at lower pred MIGHT have been adrenal insufficiency related. They can be very similar. Either way - why suffer?

[DorsetLady PMRGCAuk volunteer]

As PMRpro said, and well knows, if your PMR is still active, it can flare at any time, any dose.... and agree with everything else she has said...

Don't suffer any more, life's too short!

Had a conversation with my son last evening (probably after too many glasses of bubbly - on both parts, and this week being anniversary of hubby/dad's passing so always a bit deeper than usual ) on enjoying life...and not stressing about problems.

His, and my view -

identify the problem..

can you do anything about it, if yes, then do it,

if no, then can someone else, if yes then get them to do it,

if no-one can sort it,

then stop worrying.

Mind you because he works in finance, he's thinking about the economy at the moment...which isn't good..so he needs to take his own advice....

yours is simpler - up the dose!

[Jcarling in reply to DorsetLady]

Thanks so much! I’ve upped my dose of pred and it’s really hit me today spent my day morning sleeping in bed ( which is not like me at all) reminds me of when I first started in 2016!) Hopefully the increased dosage will sort it out over the next few days.

[headgirl]

I can relate to all you say. I was doing well on 7.5 (lots of ups & downs along the way) & then at the end of June along came Covid. On medical advice I increased pred to 15mg for 2 weeks & thanks to anti-virals I recovered well from Covid. However, it has caused a major flare, just like you, shoulders, hips & thighs affected. I've managed to reduce to 13.5mg & even then, not completely pain free. I guess I'm stuck here for a while & any taper will be very slow, so frustrating! Hope you feel better soon.

[Jcarling in reply to headgirl]

Thank you - you too! X

[marionofnorwich]

I had a similar experience - Covid in April, not severe symptoms but enough to poke the PMR. I had just dropped from 5 to 4mg a few days before and I think it was bad timing. In my case it badly affected my knees and leg muscles. In the end I have had to return to 10mg and start tapering again, after two years which is a bit depressing but necessary and at least I have stabilised again after a few months of chaos. In the end, I tapered up from 6mg (which I went to for a week when I had Covid) until I felt I had levelled out. I don't have a rheumatologist to advise but this forum helped me through, although I am still not back to the pre-Covid comfort levels in my knees. Good luck

[headgirl in reply to marionofnorwich]

Reassuring others have unfortunately been affected in the same way. This forum provides such great support.

[Jcarling in reply to headgirl]

I know it’s brilliant isn’t it! I haven’t been on for a long time as I’ve been free of symptoms for such a long time. Bit of a shock to realise it’s still with me. X

[Jcarling in reply to marionofnorwich]

Thank you hope you feel better soon x

[Rowergirl]

Interesting!. I caught Covid at the beginning of July after taking part in a rowing competition in Holland (too much partying!!) Have managed well on 7mg prednisolone for the last few months despite doing lots of rowing training. I did not increase my prednisolone dose when I had covid as my symptoms were very mild, just like a heavy cold, although I tested positive for about 11 days. As I was getting pestered by my GP to reduce to 6mg (I haven't spoken to him since before I had covid) I started a slow reduction to 6mg (over 5 weeks) about 3 weeks ago. I am now getting a lot of symptoms back, so not quite sure what to do now as not sure if it is a flare or just withdrawal. Have decided not to reduce further at the moment, but not sure if I should up my steroid dose to try and reduce the pain, and if so by how much and for how long?

[PMRpro Ambassador in reply to Rowergirl]

Add 5mg for a few days and drop back to the 6mg that worked before - up to 7-10 days at the higher dose you don't need to taper. If a couple of days does it that is great - but there is no point suffering. Deal with it quickly and you are unlikely to need more. But don't let it set in!

Very healthy and young people I know have taken months to get over even mild Covid. Tell your GP your adrenal system isn't up to snuff - you need that pred. It isn't a race and if you try to force it - you will go backwards.

[Rowergirl in reply to PMRpro]

Thank you!! Will do that.