PMR flare advice needed

[Oh-my]

I have messed up with dealing with a recent flare and would love your advice on where to go from here.

I was stuck at 11mg Prednisolone for many months and then one day I felt a change. From then I have been able to taper at 0.5mg every 3 weeks. All was good until I got to 8.5mg. I did my usual - add on 2mg for 4 days and drop back to the previous dose. This has always worked very well for me in the past.

All was good on 9mg until I reached day 9/10 and I began to feel very unwell. Flu-like symptoms and painful arm muscles. At the time I was trying to work out if it was a virus; side effects of Alendronic Acid (which I've not long been on); DOMS due to increase in driving time and helping out with my latest newborn grandaughter - a hefty lass of nearly 10lbs who needs a fair bit of jiggling and walking round with to soothe. Or a mixture of all 3.

I decided to not hang around and wait and as a precaution did my usual and went up to 11mg. After a couple of days I realised this wasn't enough. The pain in my arms improved no end (although by chance I had stopped driving or holding wee babe) but other PMR symptoms had began to appear so I increased to 12mg where I have been for over a week now. I'm loads better, stable, but not as good as I was a month ago.

Whether this is a reult of an increase in disease activity, a flare caused by over doing it, or 'the dripping tap' - I'm not sure where to go from here. Do I stay for longer at 12mg and see if things improve slowly, or increase the dose? And if so by how much? Originally I had been hoping to do an interim drop down again to say 10mg and try from there - or should I start afresh with all the tapering? My heart sinks as I never been able to drop more than 0.5mg at a time and every small drop comes with several days of discomfort. Hey-ho.

[PMRpro Ambassador]

I suspect it is too complex to blame one thing or another. Other than to suggest that babe is not so wee (that's what my preemie daughter weighed at 10 months old and walking!) and no wonder you had arm pain!

Adding 2mg is rarely enough to soothe a flare - we say 5mg for good reason. In the long run it works so much better and you are back to just above where you flared in a couple of weeks. But stress is stress - even when it is NICE stress, PMR doesn't distinguish between them. You are obviously very sensitive to dose change - and I fear even 1/2mg at a time can't be done every 3 weeks.

What remains compared with a month ago? And how do you feel you are relative to the AA? Do you really need it? Have you had a dexascan?

[Oh-my in reply to PMRpro]

Thank you for your thoughts PMRpro, much appreciated and I will spend longer at each dose in future. I have and always had first thing in the morning some stiffness or soreness, but that goes when the Pred kicks in, as it doesn’t last 24 hours with me. The difference is now after a period of sitting some soreness in my shoulders and across my back returns. Moving helps but I didn’t have that a month ago. I felt fine. I did have return of neck stiffness when I moved from 9 to 11 mg which is why I went up to 12mg but that went at 12mg.

1 have started Alendronic acid after being advised to after a DEXA scan but was hoping to stop when I reached 5mg. Again the advice given.

Dropping 0.5mg every 3weeks had been working fine - until it didn’t. The reason why is not really clear to me but maybe it’s several reasons. Time around a birth is very stressful.

[PMRpro Ambassador in reply to Oh-my]

"until it didn’t" - that is what always happens!!! If only there was some warning ...

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to treat as flare as link, using 10mg as last dose that was okay - so up to 15mg for 10-14 days… hopefully that will sort things - then back to 10mg as new start dose - and yes -0.5mg a time but at least 4 weeks [6 better] each time.. as PMRpro has said 3 weeks too quick.

healthunlocked.com/pmrgcauk...

.. and using a slow tapering plan if not already… there are a couple of good ones on here - as you may know 😊

[Oh-my]

Thank you DorsetLady. I’ll move up to 15mg. I wasn’t sure if I could do that as I have been over a week at 12mg having already moved up. That would bring me to 3-4 weeks in total above my previous good dose and why I felt I’d really messed up here.

I was doing what had worked for me up until now - until it wasn’t. So far I’ve always managed to catch in time when I’ve overshot my dose. Ah well.

Thank you for the links. I’ll give them a go.

[DorsetLady PMRGCAuk volunteer in reply to Oh-my]

You’ve had a lot going on recently - as PMRpro said in her first reply not just one issue this time.

Hopefully once you’ve settled this time , things will be go more smoothly.

[moconnolly]

Sorry to hear of your dilemma but can't advise re alendronic acid as I had no side effects .I came off it as worried about it causing problems with expected dental treatment and Consultants ok with that as I had then been prescribed HRT.

[Oh-my in reply to moconnolly]

HRT sounds a much kinder way to look after your bones. A nurse from the Royal Society of osteoporosis did say flu-like symptoms is an immune response to the AA and your body gets used to it. Previously when I took it I just got a headache. Here’s hoping it was just a virus.