Hi,
Is it when you have finally reduced to zero prednisone and can manage all previous tasks? I know this is a daft question but, as I am down to 5mg and reducing by a quarter every 3 weeks and aware that I still get stiffness in my hands, wrist and shoulders it all seems manageable and not affecting me too much and has pretty much been like this since being diagnosed in Aug 2023. Is there a test to say I am clear?
thank you
The only true test is to get to zero, be off the Pred for a number of months - and have no return of any symptoms... 😊
If you are down to 5mg and still have same symptoms as at higher doses, then perhaps those are not wholly PMR.. or it's never been fully controlled.. but you ask - no "test" as such.
Now that would be just too easy 🤦♀️
Thank you. That makes a lot of sense
The symptoms of things such as arthritis can start to be more pronounced as the pred dose gets lower, as they may have been suppressed to a certain extent at higher doses and of course we are getting older too, so even without PMR we may not be quite so bright and bouncy as we were before we got PMR.
Only getting to zero pred and being symptom-free for at least 6 months. And even then that isn't cured, that is in remission without medication. The propensity for the immune system to go nuts and turn on your body again remains for life. Even 1mg, or as little as 1/2mg, can be enough to keep very low level disease activity under wraps - which is why we recommend taking it very slowly even right to the end and not assuming 1mg can't be doing anything.
Thank you. I will continue my very slow tapering and hope we get to the end of this disease
The vast majority do and get off pred and never see PMR again. I know a few people who have had it twice several years apart and they all say the two episodes were totally different. But the best advice is really "the lower the slower" and be really sure that it is gone by a very slow last 1/2mg!!!!
Would the same be true for GCA? I am in a similar position - down to 4 mg pred a day for a month and then reducing so am wondering what happens when (if) I finally get to zero.
It is usually yes. In all the years of being on the forums, I only know of maybe 2 people whose GCA returned years later. Patients with GCA seem generally to be able to get off pred more easily than those with PMR.
Be careful not to attribute aches and pains to "other" causes, such as OA. I cheerfully did that during a brief flirtation with zero in 2020. Was back on low dose pred withing 6 weeks, and a few months later had to admit I was having a fullblown flare, complete with high CRP. I got into that state by attributing the aches and pains to OA. Now I'm convinced that a lot of my pre-PMR OA pain was probably in fact early PMR. I do have extensive OA, confirmed by x-ray as well as the appearance of my fingers and toes, but now in my second period of zero pred I am not suffering like I did in 2021 when PMR turned out to still be active.
Also, in your case, 5 mg will still be having a lot of positive effect keeping any PMR at bay, even if not at 100%. I repeat - be careful! Better a longer period on low dose pred as you taper slowly than risking a flare requiring higher dosage to quell. 🍀
Understood. Thank you for the advice
you could see if regular pain medicine (acetaminophen) manages the low level pain. If so, it’s less likely that is PMR pain and more likely other aches surfacing as you get to lower doses of Pred. As others have said, you’ll want to take it slow at this point. Your adrenals mays have to “wake up” too.
Not heard of that pain killer but will check it out.....is it on prescription only?
Paracetamol
Were your blood tests abnormal before diagnosis? The CRP and/or ESR usually are for most PMR sufferers. If so, have your tests normalised while on prednisolone? Will they stay that way when you've tapered off steroids?
My CRP and ESR levels were high at over 60 for both and yes, normalised after prednisone. I have recently spent 5 weeks in hospital for having a spontaneous pneumothorax with lots of complications including being readmitted with severe infection and my ESR levels were 408!! and only came down after when on antibiotics for 5 weeks. Interestingly, I never felt any PMR symptoms while in the hospital and continued to take 5mg of prednisone all the way through my admission.
Indeed. Injuries and infections also raise CRP & ESR levels, so doctors need to be confident these have cleared before concluding autoimmunity is causing the residual inflammation at the root of PMR/GCA symptoms.
How do you know when to stop prednisone
How do I know when in remission?
How do you beat FATIGUE from PMR 070421
When tapering should we be pain free? 
How do you know when to start tapering?
