DOM, Flare or pred withdrawal

[Ebiker]

I have been on prednisolone since March 2019 and learned a lot about pmr from this forum.Currently on 7mg daily after using DL taper successfully since Jan '23 . See previous posts. Had an awful year, but now tapering 0.5mg successfully approx every 8 weeks. The last 3 tapers have gone really well.

I am pretty fit and active but about 4 weeks ago, when I reached week 4, I started to feel some muscle discomfort in the muscles (left arm, neck and collar bone area, right upper arm and hand.

I had been using with pruners etc so stopped the gardening and there was improvement. I decided it was muscle strain, as I have lost weight and muscle again in the last couple of months. Now I have some stiffness in left buttocks. Today I felt I had pulled a muscle in shoulder lifting a heavy cooking pot and neck stiff.

I have found that paracetamol is helping to ease these niggles and I am not in any pain. So my conclusion is DOMS and muscle strain. Obviously, I am not attempting the next drop.

I am seeing my physio tomorrow to work out if the exercises I do daily for spinal fractures could be part of repetitive exercise. I have been doing them for 18mths now with a huge improvement in posture and aches.

I would like any other opinion please. Am I being sensible. I don't want to rush into upping the pred if this is not a flare. I walk a lot, am always on the go and the only physical problem is some discomfort.

Appreciate all the time so many of you give to this forum.

[HeronNS]

Sorry to hear about these "extra" aches and pains. Its important to know that one of the unfortunate effects of pred is it can cause muscle weakening. In light of that, your physiotherapist may give some advice about modifying, or possibly reducing the repetitions, of your exercise regimen. And you've just learned the hard way not to get too enthusiastic about unaccustomed exercise in house and garden! It is good that the pains were eased both by cutting back on the activity and by acetaminophen, a sign that extra pred is not necessary. However, if something seems to be lurking for a long time, and getting worse, perhaps starting to remind you about the bad old days before diagnosis, that would be a red flag regarding your taper. It seems like you have a good grasp of how to handle that taper, however, so trust your instincts.

Good Luck!

[PMRpro Ambassador]

I'd say what you are doing is a very reasonable approach. If you stick there and wait to see if things at least remain the same or (best scenario) improve you should be able to be fairly confident that it isn't a flare. You can never be 100% sure of course so caution is always called for.

But when you see the physio tomorrow, if it were me I would ask if the loss of weight and muscle is anything to be concerned about. Is it generalised weight loss without aiming to do so? If so, maybe mentioning it to the GP is a good idea - unintentional weight loss is always to be treted as a red flag. Just in case ...

[Ebiker in reply to PMRpro]

Thank you DL, PMR pro and Heron NS. Most reassuring to read your responses as you are so experienced and have helped me sort my thoughts more than once.Re weight and muscle loss, I have had all this before from about June 2022. I am size 8 now from 12/14, but bmi OK. Dr arranged all sorts of tests and scans. Nothing amiss found except scan threw up the 5 compression fractures and after PMR enlightened me I had the zolendronic infusion privately a year ago, as NHS taking too long. I am now waiting for tel appt for second one on NHS! Some of the weight loss was probably due to decreased bone density.

Good to know I am on the right track. Many thanks.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments - and maybe leave tapering for a while. Some enlightened Rheumies suggest no tapering during winter months… make sense really, bodies need to work harder in cold/wet conditions.

[Ebiker in reply to DorsetLady]

Thank you DL, PMR pro and Heron NS. Most reassuring to read your responses as you are so experienced and have helped me sort my thoughts more than once.Re weight and muscle loss, I have had all this before from about June 2022. I am size 8 now from 12/14, but bmi OK. Dr arranged all sorts of tests and scans. Nothing amiss found except scan threw up the 5 compression fractures and after PMR enlightened me I had the zolendronic infusion privately a year ago, as NHS taking too long. I am now waiting for tel appt for second one on NHS! Some of the weight loss was probably due to decreased bone density.

Good to know I am on the right track. Many thanks.

[Ebiker in reply to DorsetLady]

Leaving tapering for a while over winter seems a good idea. My body hates the cold, dark weather at the best of times. When I do start next taper, it might be a good idea to do each week twice. I don't know when that will be, as I would want to feel really well again before attempting it.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Sounds like a plan - what my ultra tapering plan is! ..

[Ebiker in reply to DorsetLady]

Started this thread a week ago and now need some further advice. My physio has reduced my exercises and given me a couple of light ones, as my posture etc from the compression fractures is greatly improved. Iam beginning to think that my current pred at 7mg isn't enough, however. The arm/neck stiffness has improved but gives me some aching again on only very light use. Plus I have had some wiped out days of feeling lousy.I am wondering if I should go back to 7.5mg and if so should I take any extra for a few days first?

[PMRpro Ambassador in reply to Ebiker]

No harm trying the flare protocol for a few days and see if that improves things. It could be the new exercises - asking muscles to do things they aren't used to.

[Ebiker in reply to PMRpro]

Can you tell me how I can access the link to print out the extremely useful info put together by DL and yourself, on flares, pred withdrawal etc, please. I am using an android phone.

[PMRpro Ambassador in reply to Ebiker]

All our stuff on Tapering in is the FAQs under T - the link to the index is at the top of every thread in a featured content box.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

see this - if you haven't found already

healthunlocked.com/pmrgcauk...

[Ebiker in reply to PMRpro]

Thanks PMRpro. Frankly I wonder if I am just being a wimp! I am paranoid about flaring after the vaccine re-activated the pmr it would seem, two years ago and I ended up back at 15mg! See past post. Previous to that I hardly knew I had PMR most of the time. Since then I found it hard...just about functioning for a year.

Today I felt lots better than yesterday. I might not be sparky and full of energy but I can get on with day to day living. I have just walked 1.5mls, no problem.

Perhaps I should accept that there will be down days and that I will have some not great days when dropping. I am able to go about household tasks, go to M&S and out for lunch most days. If I have an off day there is no pressure on me. I don't live alone and can give in when tired. So, I guess for the moment the best route is to stick it out on the 7mg and not expect miracles.😄

[PMRpro Ambassador in reply to Ebiker]

Probably! Acceptance is key - and particularly so as you get to this sort of dose where the dose is maybe not quite enough to compensate entirely for the suppression of cortisol production as the dose drops and the adrenal set-up must take up the strain of a top-up but lags behind. It can be difficult to differentiate between PMR flaring and the aches of adrenal insufficiency which is why we make such a big thing of tapering in small steps and not too often which gives your body the best chance of coping with the return of adrenal function. Even then, it can be hard work.