Am I overdoing it?

[RedRum1968]

Started my PMR journey in May 2023. Diagnosed with PMR, then in July was told my bloods didn't confirm this so advised rapid taper. Symptoms returned very quickly. End of July back on steroids 15mg. I’ve been tapering very successfully since then and am now down to 4.5mg (tapering 0.5mg every 2 weeks). Last week I started to get a pain/stiffness in my ring finger (one hand only) and over the last couple of days I’ve developed a really heavy feeling in the top of my shoulder (not pain more like an intense weakness). I have horses and haven’t really changed my lifestyle much/or taken a step back from yard duties (although I have adopted a much healthier eating lifestyle). Am I overdoing doing it at this lower level or could I possibly be heading for a flare? Or is it possibly my adrenals stuttering? Is my body telling me I need to slow down? Thanks

[DorsetLady PMRGCAuk volunteer]

if you are reducing every 2 weeks [albeit only 0.5mg a time] that’s really too quick.. once people get into singles figures they are reducing 0.5mg a month.

The problem with reducing every 2 weeks is that you can never be sure current amount is sufficient before you reduce - it can take 2 weeks, sometime more for a flare to materialise.

You may find returning to previous dose, or slightly higher may resolve things… but do stay at a higher dose for at least a month… and whether it be PMR or adrenals, you do need to appreciate you have a serious illness and amend your life style - not dramatically, but enough to accommodate your current situation.

[SheffieldJane]

It would be very unusual to be approaching the end of your PMR journey after such a short time. I think you are suffering the effects of a too rapid taper. Half a mg is good but perhaps a 4 week timescale. I would be inclined to go back to the dose you were last comfortable at and rest there for a few weeks. You may have to raise the dose a bit. It sounds like the inflammation is spreading, I would increase your dose immediately. I wouldn’t resume tapering until your symptoms are properly settled. The finger pain sounds like an injury, I would see the GP about it. Prednisalone only deals with the inflammation caused by our conditions. It does nothing for the underlying disease. The average time that PMR lasts is around 5 years. You need to help your recovery along by pacing your activities, have plenty of rest and avoid heavy work. Our muscles cannot recover from heavy use in the way a well person’s would respond. If you have a doctor with a good understanding of PMR and steroids, I would discuss this with them. Unfortunately some medics are less than helpful. Have a look at FAQs on here to help you to understand the management of your disease better. Best wishes.

[PMRpro Ambassador]

In addition to DL's comment - remember you are not reducing relentlessly to zero. You are tapering to identify the lowest effective dose, the lowest dose that works as well as the starting dose did. I think you have probably reached that destination though exactly where it is is clouded a bit by the speed of the tapering. Our mantra is "the lower, the slower" - not just because you are bound to be getting closer to the end point for now. And you are in the "adrenal zone" now - they take time, sometimes lots of it.

If you aren't doing more than you have been doing up to now, then being able to do that is a sign the dose is still enough. If you CHANGE something, that is different and it might have to be rethought.

If it were me I'd go back to 5mg and see if that is enough but stick there for a month to decide and add a bit more if it isn't - maybe even try the flare protocol for a springclean first before settling at 5 or 6mg and trying a much slower taper in future.

To be at 5mg after less than a year is great - pretty much ideal, that is the desire, find the lowest effective dose as soon as you can and then slow right down and wait it out until the PMR goes away. Just because this stage was quick doesn't mean the next one will be too!

[RedRum1968 in reply to PMRpro]

Thank you for all your responses - all very informative and very much appreciated. I’ve gone back up to 5mg and will stay there in the hope everything settles down. Unfortunately, mentally I’d decided I was well on my way to getting off steroids. PMR has other ideas, moving forward I’m going to go much slower and just hope I can plateau back out on 5mg. Fantastic support here - thank you again. X

[DorsetLady PMRGCAuk volunteer in reply to RedRum1968]

Unfortunately, mentally I’d decided I was well on my way to getting off steroids.

Sorry to tell you, but at less than a year, that’s very unlikely….

More realistic to acknowledge that the correct dose of Pred is required to give you a decent quality of life…that certainly is achievable.😉

[DorsetLady PMRGCAuk volunteer]

Further to SheffieldJane comments, not sure if you've seen this, if not, maybe have a read..

healthunlocked.com/pmrgcauk...