I was diagnosed with PMR in February. I have decreased from 40 to 18. The doctor just had me decrease to 15 and stay there for 3 weeks Today the left side of my neck is so stiff and I'm totally wiped out. I have felt pretty good until this decrease. Will this stiff neck ease up. I don't know whether to wait it out or go back up to 18. She sad my sed rate was normal, meaning the pred was controlling the disease. I hate to go back up but this neck is really bothering me
The inflammatory markers are an indication that prednisone has reduced the inflammation. But they do not really show the activity of the disease, oddly enough. Some people with pmr never have raised markers. And I have found that even though my pmr pain is very well controlled, I still have slightly raised sed rate (it is slowly improving after many months). You haven't been on pred for that long, and your initial dose was rather high for a diagnosis of pmr, the usual start is generally closer to 15 or sometimes 20. So it's taking your body time to adjust to the lower dose. If you have only just made this reduction and you got the pain right away it might simply be pred withdrawal. If it is no worse tomorrow, I suggest trying to wait it out. If it is worse or at any time over the next few days it gets worse, you may be experiencing what is called a flare of the disease which would mean you'd need to increase your dose to the point where you last felt comfortable. And then start a much slower reduction. Certainly once you are at 15 it would be a good idea to keep your reductions to no more than 1 mg a time, so you can more closely monitor whether any increased discomfort is pred withdrawal (quite quickly after the reduction) or a flare (gradual increase of pain over the days following a reduction\). Withdrawal shouldn't last too long, maybe a few days, shouldn't get worse, and should begin to go away after a few days. A slow reduction allows you to catch a flare before it gets really bad.
Others will be along, perhaps tomorrow, with more detailed and expert advice on how to manage a really slow (and more likely successful) reduction - and also how to reassure your doctor that this will work well for you. All the best; you are not alone!
Remember that having PMR and being on pred doesn't excuse you from other problems! Have you wrenched your neck maybe? Or sat in a draught? Or are you perhaps developing a viral infection? Or do you have back/neck problems anyway? PMR tends to be similar on both sides when it does flare - when it is just one side it is often because you have another weak point where there is inflammation not due to PMR, myofascial pain syndrome is one case in point, and which improves with high doses of pred, returning as you get to lower doses.
Otherwise Anhaga has said it all pretty much. Just because the ESR is "normal" by your doctor's standards doesn't mean it is YOUR normal - it ranges from 1 to 20 across the population - and when was it normal? Mine is 4 - if it were 20 it would be very raised. It also tends to lag behind any developing inflammation - and just because it was normal at 18 doesn't mean it will still be there at 15.
Based on my 3 years experience being on Pred I follow my symptoms and do the tapering following the 'slow tapering ' schedule we learn here on the Forums.
If we jump to fast as docs do we have flare ups and then we have to go back to higher doses of the steroid until we get the point we were before!
Hope you will feel better soon. 🌺
If nothing else is giving you grief I would think the stiff neck is just that - a stiff neck.
Feeling wiped out is normal for PMR, and/or a reduction and could have nothing to do with the neck.
I'd stick it out for a few days and see what happens!