Progression of PMR

[Creas]

I'm interested to know how PMR changes over the course of the disease.

I found reducing my pred (that's all I take, nothing else) from 10-7.5mg 3 months ago was effortless but am struggling to reduce it below that.

I realise 7.5mg is roughly equivalent to the amount of cortisol our adrenals produce if they're working, and they stop doing so once one's been on pred for more than a few weeks.

Hence reducing below that amount IS difficult - has to be done v gradually to give the adrenals time to kick in and wind up.

However, I stopped trying to reduce below 7.5mg and stabilised, back to a tolerable pain level - able to play a bit of tennis though not matches like I used to play. And now the pain seems to be getting worse: neck is particularly bad, lower-mid spine not good, glutes very bad, shoulders relatively pain free.

Anyone else experienced this? It's starting to make me anxious thinking I might have something else or some progressive disorder. Could this still just be simple PMR? I do hope so.

Thinking about upping my dose. Likelihood of getting to see the decent rheumatologist again on the NHS is remote: it seems to be the process in the NHS that they hand you back to your GP and then you have to start the process of getting a referral all over again. Have I understood that correctly? It doesn't seem right that I am not under the watch of someone who knows what they're talking about.

[SnazzyD]

If it were me now I’d be frustrated but not worried. To have got to 7.5mg since last Sept really isn’t bad. The aim of reducing slowly is to accurately find the lowest dose that you need to counter the inflammation produced by your autoimmune activity. Sounds like you have found yours. At this stage a rheumatologist isn’t what you need, but time, a slower reduction plan now and patience.

Bear in mind that the only the way to nudge your adrenals into gear is to be in deficit, whilst trying not to have an adrenal crisis. The trouble with your dose is that it can be too low to do the job of a fully functioning pair of glands but still high enough for some suppression to take place. I had to get through this no man’s land to about 5mg before I felt better. Low adrenal function may cause fluey aches (in my experience) but not the kind of problems you are having. So, a gently forced (slow!) reduction right now is not a good idea until your PMR is settled.

Regards exercise, the trouble with active people, what rates as light activity often isn’t when it comes to rehabilitation. One often has to aim really low and work up to avoid delayed onset muscle pain from over doing it.

[Creas in reply to SnazzyD]

Hi Snazzy, just re-reading these replies and I have to ask: what do you mean by 'fluey aches'? I've never had flu (or at least not that I'm aware of).

[PMRpro Ambassador in reply to Creas]

Never had any aches with a viral infection? Some people get them with bad colds too. I've only had real flu once - couldn't get out of bed for a week - but have felt aches and hurt to touch with other things.

[SnazzyD in reply to Creas]

I also call it cloud pain, where it feels like you are enveloped in a mist of pain that you can’t really pinpoint and can be mild or severe. So, legs might ache but there isn’t a particular spot to locate as the source.

[DorsetLady PMRGCAuk volunteer]

You seem to have had issues all along with getting a definitive diagnosis - and I wonder if you do understand what PMR is? Maybe have a read through this link-lots of information there- hopefully some will help-

healthunlocked.com/pmrgcauk...

And this re adrenals-

healthunlocked.com/pmrgcauk...

Cannot comment on rheumatologists in your locality, but unless you are a complex patient, you may only need to be seen by a Rheumy once or twice maybe and then referred back to a GP for ongoing treatment. A good GP is very capable of treating PMR.

[Rugger]

It does sound as if you've reduced the pred dose too quickly and now you are experiencing PMRpro's "dripping tap" scenario where the inflammation has been allowed to build up to the point where you're experiencing more pain.

It is early days for you compared with many of us, so if I were you I would act on your gut feeling to up your dose. Do discuss this with your GP - it might help them with their Continuing Professional Development to have you, an "expert patient" in PMR management!

All the best.

(If you're interested, have a look at my old posts with "Graph" in the title)

PMR : 2016

GCA-LVV : 2019

[Koalajane]

I have had PMR for 7 years, now at 3.5mg.

I have never seen a rheumatologist and cope mostly on my own although my GP is always there if I need help.

I think your drop from 10 to 7.5mg was too much, certainly more than the 10% recommended. You need to slow down.

Good luck with it all.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are tapering the dose to find the loweest effective dose at any given time. You started with more than it is hoped you will need and then you titrate it slowly and in small steps so you identify that dose as exactly as possible - not too much, not too little, just right said Goldilocks! Did you drop from 10 to 7.5mg in a single step? we say not more than 1mg at a time under 10mg but sometimes even that will miss the sweet spot. If you are even a tiny bit under the optimum dose the unmanaged inflammation will build up over time until you notice it, like a dripping tap fills a bucket sooner or later.

[piglette]

The way the UK health system works is not ideal. The GPs have never been part of the NHS as they refused to join in 1948 and no government has had the nerve to force them to since. The system means that a GP refers you to the NHS and then the NHS hands you back to the GP when they are happy. One day they will all be part of the NHS with any luck.

[PMRpro Ambassador in reply to piglette]

Think it may be more likely now since so few can afford to set up as independent practices and there are increasing numbers who are employed rather than partners.

[piglette in reply to PMRpro]

I think you are right. The government I believe has been encouraging GPs to join the NHS recently. It is sad it did not happen in 1948. It might have cut down on some of the bureaucracy. On the other hand the bureaucrats would probably have found some other area they could bind up with red tape.

[PMRpro Ambassador in reply to piglette]

Might also help if this government lifts the ridiculous limitation of funding that allows practices to take on nurses and PAs but not new GPs which is what they actually need!!!!

[piglette in reply to PMRpro]

I soooo agree

[SnazzyD in reply to PMRpro]

And that they might start paying nurses the going rate instead of their own rate. It always felt like they knew people were in Practice nursing for a reason and so could get away with paying less while partners in the places I worked were educating their kids privately, taking a couple of long haul holidays annually and driving nice cars. It may well be because of the area I am in of course. I know some practices were operating on a shoe string because their practice population was old and disadvantaged. The ones I worked for had lots of wealthy and students who were well, bringing in per capita income and barely used the service.

[PMRpro Ambassador in reply to SnazzyD]

True - it is all totally cock-eyed ...

[TheMoaningViolet]

Hi Creas, everyone has different disease and recovery progression, but I found that my muscles were more prone to aching while I was on Prednisolone and even a few months after I stopped. So, the pain you are experiencing could be connected to the exercise and be atypically more uncomfortable that you would normally expect. Finding a good physio may be a good idea, so you can tailor your exercise and deal with any problems which are not necessarily PRM-related.