Symptom-free state ?

[Silverslinger]

Should I expect to achieve a symptom-free state at any point whilst on prednisolone treatment.

Just as an aside, I have received almost no management of my PMR by my GP, being left to alter my steroid dose as I thought best.

[DorsetLady PMRGCAuk volunteer]

Ideally yes - that's the aim after all.

Are you saying you have never been symptom free, not even on the initial dose?

I know you're not a new patient, but these links might be helpful to you - my intro -

healthunlocked.com/pmrgcauk...

PMR treatment - from PMRGCA Uk charity's site -

pmrgca.org.uk/wp-content/up...

[PMRpro Ambassador]

It depends - some people achieve a symptom-free state at their starting dose but for others there are always some niggles left. You have to start on enough pred for that though - if 15mg isn't enough, you need to try a bit more and the most recent PMR guidelines say the lowest effective dose in the range 12.5-25mg and possibly you need to accept it will take more than a month for a really good result. But there seems a renewed trend to use as little as possible and start to taper after 2-3 weeks which more often than not is a recipe for disaster and flare.

The criterion for the PMR response to pred is a 70% global improvement within a relatively short time. That doesn't mean 70% of everything - the stiffness may be 100% improved within hours, muscle pain relieved in a few days and bursitis may hang on for a few months. That was the pattern I had but after 3 or 4 months I'd say I was well over 95% symptom-free and that has been the case all along PROVIDED I took enough pred within the PMR sort of range. I've never needed more than 15mg though.

[piglette]

I seem to have a new GP every year as they have a fast turnover at my surgery. I don’t think any of them have bothered much about my PMR unless I have a high inflammation marker. This board gives you much more help anyway.

[PMRpro Ambassador in reply to piglette]

Are they employed GPs? Just filling is, gaining experience before getting a better job?

[piglette in reply to PMRpro]

No they are permanent GPs, we have loads of trainees too. We have one senior GP who I think causes the problem, it is not just GPs but nurses who leave in their droves and also receptionists. This GP has just written a book about her father who was a doctor in India and is flogging it all round the place, she has also set up Zoom lectures on various things, she advertises them as world wide. She has a private practise as well. Not in my village though, I am not sure if she carried on over lockdown though, probably did, as no GPs seemed to come to the surgery, they were all working from home supposedly or running their private practises!.

[PMRpro Ambassador in reply to piglette]

That was the other option - senior partner with delusions of grandeur ...

[piglette in reply to PMRpro]

Spot on.

[HeronNS]

And a slight tangent here. If you focus your question to any given day, "Should I expect to be symptom-free for at least part of every 24 hours", then I'd suggest the answer should be yes. I did become symptom-free on early days at 15 mg, but as I tapered down pre-existing OA re-emerged, and also something I referred to as niggles, a term now commonly used here. And I am sure had I not been prepared to accept the niggles (which did not affect my quality of life) I would never have been able to taper to a low of 2 mg, where I was quite happily settled for several years. In that time I was able occasionally to taper lower, but eventually would always have to increase slightly when the temporary daily niggles started to spread into an all-day phenomenon. It was a balancing act, definitely I was on my lowest best dose and I have not yet gone into remission although all this started in 2014, first pred 2015.

[MrTamborine in reply to HeronNS]

Could you describe what the “niggles” feels like?

[HeronNS in reply to MrTamborine]

Very mild PMR symptoms, the kind of thing you'd ignore if you didn't have a PMR diagnosis.

[MrTamborine in reply to HeronNS]

Gotcha! Thanks!!