What would you do?

[PMArrrrgh]

Hello, I haven't checked in for a very long time because everything had been going ok.I've been on Prednisolone for 3 years this Christmas after getting diagnosed with PMR back in October 2020.

Initial advised taper was too sharp, I flared very quickly and painfully. But, after joining this forum back in 2021 I learned of the slower taper and the Rheumatologist has been OK with me handling my own taper which was 0.5mg reduction every 8 to 10 weeks .

I'm down to 2.5mg but have stuck on that dose for over 6 months as I've had gradually increasing neck, shoulder and hip pain returning. (I feel) I've reached a crunch point right now.

I was previous to PMR a reasonably mid 50s Male but at 58 I'm having to rest a lot more due to aches and pains in the hip and neck/shoulders in particular. I'm also sleeping most afternoons due to what I think is general fatigue, eg, I've just done a 40 minute minute walk with my Wife and came home and slept in my chair for about an hour . I'm finding the background pain and uncomfortable hips and shoulders really wearing me out to be honest. I feel as though I've 'aged' a lot in the last few months.

I see the Rheumatologist every 6 months and I mentioned the neck and left shoulder pain and stalling at 2.5mg Prednisolone, an MRI scan revealed nothing major I believe as I haven't been recalled back to the clinic between scheduled appointments as I was told I would be if the scan revealed any thing nasty.

I'm lucky enough to receive copies of reports he sends back to my GP, in the most recent consultation (5th July 23) aswell as sending me for the neck MRI scan my CRP was marginally raised at 7.8.

In September my left hip was causing me serious problems which may not be PMR related but Osteoarthritis which had been noted before in an X ray when I was 1st diagnosed with PMR. Quick background story, my left shoulder and left hip were frequently bashed in my teens and then again in my mid 30s to late 40s through skateboarding (no really, stop laughing at the back!).

I have a Physiotherapy appointment booked for next week at the GP Surgery to discuss the recent acute hip pain increase. It doesn't feel as though it can move as much as it used to and certain motions cause intense pain and has brought tears to my eyes I confess.

Question, would it be wise to increase my Prednisolone dosage for a while to get the pain and fatigue down to manageable levels again? If so, what would be a sensible increase from 2.5mg daily? I remember seeing this advice for someone else a few years ago.

Thanks.

[PMRpro Ambassador]

I think it is almost certain you have tapered to too low a dose of pred to manage the inflammation - and are flaring. And the dose you are at is also low enough for adrenal insufficiency to be a feature - causing the fatigue. It may be contributing to the aches and pains but if so, I would expect that to improve over time, albeit slowly. But you report it increasing - that is typical of a PMR flare due to slightly too low a dose of pred.

You probably need at least a week of 5mg on top of the current dose where you are flaring and then you could probably drop back to 3mg - the 2.5mg is not much too low, but it is too low.

[PMArrrrgh in reply to PMRpro]

Noted.

Thanks very much PMRpro for the clear concise reply and the reasoning behind it.

Much appreciated.

[DorsetLady PMRGCAuk volunteer]

Do as PMRpro has advised - and this in link gives info on dealing with a flare -

healthunlocked.com/pmrgcauk...

But at such low doses your adrenals may well be struggling as well - accounting for some of the fatigue -

healthunlocked.com/pmrgcauk...

[PMArrrrgh in reply to DorsetLady]

Thanks for your reply DL and the links, I shall comply 😃

[DorsetLady PMRGCAuk volunteer in reply to PMArrrrgh]

Pleased to hear…and hope it works for you … didn’t mean to sound like an order…🤔

[mtb210]

Hi, I am of similar age and have been on Pred for 3years. Also into fitness and have learnt when I start sleeping in the afternoons its time to up the Pred. Usually by 2mg for about a week then start tapering down. The extra amount is really noticeable "gives you wings".

All the best.

[PMArrrrgh in reply to mtb210]

Additional wings may have helped when I was skateboarding a lot 😁 I only stopped at 47 because I wasn't bouncing like I used to when I fell off. Cycling took over after that, I discovered the simplicity of Single speed and fixed gear and spent a few excellent years riding around London and Kent.

[Merryfield]

Do you think damage in your hip is causing pain MIGHT be relieved by hip replacement? I have two metal knees that have enabled me to walk and even do light squats.

[PMArrrrgh in reply to Merryfield]

I'm sure it would, but tbh I'd rather keep my own hips for as long as possible before going down the replacement route, I'm only 58. Lets see what the outcome from the Physio appointment and Prednisolone increase do firstly I reckon.

[PMRpro Ambassador in reply to PMArrrrgh]

It is far better to have the replacement before the damaged natural hip restricts your activity too much - the fitter your muscles are, the better the recovery - see Andy Murray's recovery from his hip resurfacing which is an alternative to hip replacement for certain patients.

[sidra1968]

Hello, I would up the Pred like Pro said (usually does the trick) and I also ice my hip every morning that it hurts ..that and just normal morning movements of making coffee, etc seems to help me for whatever reason. But I do sit in a recliner with the ice for about an hour (held with a wrap that has velcro). Keep us updated!

[PMArrrrgh]

UPDATE 3 days later.

Hello again,

Well, what a difference 3 days at 7.5mg can make! Thanks for the advice everyone, I feel pretty good in only 3 days, my neck, shoulders and fatigue are greatly reduced and I feel more like 'me' again.

I still have non-PMR problems with my left hip that Prednisolone doesn't seem to have any affect on (but Paracetamol does unlike PMR pain) but as mentioned before I go to Physiotherapy this week to investigate what's going on with that joint as a separate issue.

Very interesting to observe how rubbish I'd been feeling for the last few months and how it can very slowly creep-up on you over time without realising it.

I need to keep an eye on my 'marker-symptoms' a lot more carefully to prevent it going on for too long again.

Ta again for all the advice everyone.

[PMRpro Ambassador in reply to PMArrrrgh]

Just remember it!!!!!

[PMArrrrgh in reply to PMRpro]

<salutes>!

Will do boss 😁

[PMRpro Ambassador in reply to PMArrrrgh]

So says everyone - until the next time

[PMArrrrgh in reply to PMRpro]

Ha! Harsh but true no doubt 👍

I've been approximately 3 1/2 years with PMR and I'm still learning about it.

[PMRpro Ambassador in reply to PMArrrrgh]

I've had the symptoms nearly 20 years, I was still 51 when the shoulder stiffness and leg weakness started. I'm still meeting new things about it.