I'm new here- made a couple of comments and have followed conversations, gleaning invaluable info about taking things slowly - both with tapering and lifestyle! Thank you to all you generous-hearted contributors in helping my understanding of the condition.
I now have a specific query, if anyone can help.
I had my diagnosis in mid June and was started on 15mg prednisolone.
Thrown into the mix - I contracted covid in mid July - felt I got off lightly having had 2 jabs - rough for a few days then picked up. Though a week after, I started feeling more fatigued. My energy levels hadn't been great, but that was all to be expected from the PMR.
After 6 weeks on 15 mg, my bloods showed CRP down - undetectable levels - but blood viscosity still up - (my GP surgery doesn't use ESR) I was recommended by one GP to reduce to 14mg. A week later another GP I had to consult on another matter said, looking at my blood results, I could go down to 10mg and thought the raised viscosity could be the covid. That reduction sounded too drastic to me so taking advice from what I've read here, I reduced to 12.5mg which I've been on for 11 days.
Two days ago I developed what I think may be bursitis in one knee - I understand this is associated with PMR. It's not painful but just above my knee feels enormous (doesn't look it) and doesn't bend very readily - feels a bit pressured.
So, my questions.....
I am basically confused as to what constitutes a flare and therefore an indication that I'm reducing dosage too quickly.
Does fatigue itself indicate this - though personally I may be suffering from post-covid fatigue anyway.
Is the pain-free knee condition - bursitis?! - an indicator?
Thank you for reading my rather long post....
Written by
orangebee
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Hi Orangebee - l’m going to send you some links to read as l’m out in the garden mid supervising the moving of a rather large plant. Will check in again later. Meanwhile l’ll add the links.
Hi, sorry only just getting back to you but l see you’ve had lots of replies, l’m sure you will have read the various tapering plans & your first GP had the right idea dropping to 14mg - you will always get differing opinions even amongst the experts & Rheumatologists with lots of experience. You’ve had Covid on top of a recent diagnosis of PMR which is a double whammy & more of a reason to taper slowly.
Did you injure your knee causing the bursitis? My husband had this a couple of years ago & l saw him cause it, it took a good while to resolve as Drs are very loath to draw the fluid off incase it causes an infection.
I’m sorry you’ve experienced fatigue & it could be a combination of the effects of Covid & the drop in your steroid dose.
I do hope you settle down soon.
Kind Regards
MrsN
Yes thank you the bamboo has been repositioned only two more to do!🎋🎋🎋
Fatigue is an integral part of almost all autoimmune disease and the pred doesn't really help a lot. The pred does nothing for the a/i disorder, it just combats the inflammation and so the symptoms it causes. The real illness chugs away in the background making you feel as if you have extended flu - so that plus post-viral effects whether long Covid or not will be difficult to distinguish apart.But the combination of the two does mean you need to be very wary with reducing - and the doctor must be on something telling you to reduce from 15 to 10mg on the basis of the blood markers. They tell you nothing in advance - that they are normal only means the current dose of pred is enough to suppress the inflammation. Even reducing 1mg can be the difference between the old dose being enough and the new dose not.
Reducing the pred in PMR is NOT the same as in an acute condition - your doctor seems woefully unaware of that.
Morning! Not exactly get up and go but brain clearer before the side-effects of the meds kick in! The posts are really informative - thank you. It's so helpful, to have drummed into me that fatigue is an integral part of the disease - I think I've been kicking against it! And I think I was also kidding myself that I'd got off lightly with covid.Thank goodness I'd been reading the advice here, or I'd be in real trouble with the suggested drop to 10 mg. Two months in and it is really clear that I have to take control of my medication myself rather than have different/confusing doctors direct me.
Thank you all so much for your advice and support.
My knee is a little better today - can't remember doing anything in particular but it is perhaps too easy to overdo things! Hence the pure supervisory role with the bamboo MrsN?!
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