Relapse after having Covid

[Ptolemy66]

I have been in remission for about 6 months (off Prednisone since October) after having PMT for about 6.5 years. Apart from a bit of stiffness now and then I haven't had any PMR symptoms - until now. Three weeks ago I had Covid. Wasn't too bad and I recovered pretty well within a week. This last week however I have started to have the familiar pain in the shoulders - although this time mainly in the other shoulder from last time. The pain is relatively minor but the nausea, tiredness and general malaise is as bad as last time. I started on prednisone again a couple of days ago - started on 1, then 2.5 now 7.5mg today.

Questions:

- Has anyone else had a relapse after Covid?

- What dose did you find helped with symptoms (I'm hoping I don't have to go back to 15mg)?

- Did you find that the flare was temporary and you were able to taper of the steroids quickly?

Thanks

[HeronNS]

My suspicion (but I don't really know) is you might do better on a short term at a higher dose and then a fairly rapid reduction (not down overnight, but a bit faster than the usual PMR taper) to whatever lower dose manages the symptoms until covid lingering after effects disappear. Have you found the 7.5 is helping?

[Ptolemy66 in reply to HeronNS]

You could be right. I'm just trying 7.5mg today. Definitely better than yesterday but still symptoms. I'll try 10mg for a couple of days to see if that works then start a taper down.

[HeronNS in reply to Ptolemy66]

You might as well knock it down as soundly as you can. Good luck.

[Nextoneplease]

Hi Ptolemy 😊

How very disappointing for you after being in remission. I agree with Heron that a higher dose like 10mg , then reducing quickly, a bit like sick day rules, sounds about right.

However, I’m just wondering also whether this is in fact PMR, or whether it’s still the after effects of Covid. If the latter, presumably pred won’t help. I really feel it would be wise to seek medical advice on this if you’re not feeling better within a few days. I’d hate to think you got back on pred on a regular basis if it turns out not to be necessary.

Good luck and hope you feel better soon 😊xx

[SheffieldJane]

That’s a blow! I do agree with the others - zap it with a higher dose - creeping up in dose is not very effective. I hope you get this reactive inflammation under control soon!

[Ptolemy66]

Thanks for the comments guys. I took another 2.5mg mid morning today to make 10mg total for the day (I am in New Zealand so my post was first thing this morning). The extra 2.5mg has done the trick. Pain has gone, nausea gone and now I'm zipping around like a frog in a blender.

[Nextoneplease in reply to Ptolemy66]

Brilliant news and great description! 👍xx

[DorsetLady PMRGCAuk volunteer in reply to Ptolemy66]

Just make sure the frog doesn’t jump too high though 🐸🐸. Geddit, geddit!

[Predderman2020 in reply to Ptolemy66]

how long did you stay on higher dose? and when you reduced, did symptoms stay in abeyance? T

[Ptolemy66 in reply to Predderman2020]

Only on the higher dose for 2 or 3 days and once pain had subsided I started tapering 1mg every couple of days until I starting feeling the odd twinge at about 6mg. Since then I have only managed to taper 0.5mg every month and am now tapering 0.25mg at a time. Down to 3.5mg

[Judyliz]

From reading about the subject I am aware that 'long covid' symptoms are very similar to PMR.It might be worth contacting your GP or rheumatologist, who ever it was who diagnosed and supported you and keep them in the loop. Just in case!

Very good luck with your plan, it sounds eminently sensible and possible.

[PMRpro Ambassador]

Creeping up the doses almost never works well - you are always playing catchup as the bucket fills faster than you are removing the contents so I'm pleased to see you jumped a bit higher.

Difficult to say whether it is entirely PMR or a mix with the Covid after effects despite the apparent recovery inbetween, Really is something to play by ear I think.

What has your doctor said? Anything?

[Ptolemy66 in reply to PMRpro]

I haven't been able to see my Doctor yet - he's got Covid himself at the moment. I'll try and get in to see him after Easter.

[PUMC]

I had COVID (very mild) while on 6 mg in January. My PMR flared, and my CRP went from 5 to 14. My Dr. had me take 10 mg for 2 weeks, then taper from there. I’m tapering at 1/2 mg every 2 months - her advice. She said the slower the taper, the less likely another flare.

[Ptolemy66 in reply to PUMC]

Yeah, good advice. When I Managed to get off prednisone the first time, I did it by tapering very slowly. Towards the end it was 1/4 of a mg per two weeks.

[Predderman2020]

Thanks - I may have the same picture. I see you found the higher dose did it. Are you back down now? And did it recur? I once saw a Long Covid video where a guy said Steroids really helped him when he was due to work extra long days, but only took them sporadically because of the 'nasty side effects'.

[Ptolemy66 in reply to Predderman2020]

Hi, I've managed to get down to 3.75mg but obviously not off them completely. Pretty frustrating. I hope every time I get Covid I don't have a flare and have to go back up.

[Predderman2020]

yes! me! I was also doing very well after Covid and then the PMR lookalike symptoms started. Nausea, pain, fogginess. I went up for a week+ from 7 to 12 mgs, and no noticeable improvement whatsoever. Pmrpro says treat Covid like the disease it is, and take it easy and take it seriously, which is what I am doing - please let me know how you get on! I would appreciate it. T

[Predderman2020]

Thanks for your two posts/responses. Much appreciated. T