So after being on prednisone 20 mgs for a couple of months now, my sed rate is down 40 percent to 37, but I am still very much symptomatic.
Comments welcome, and all the moral support most welcome!
Hi joe95312, how do you feel? After my flare the Rheumy stepped me up to 20 mg. My wife had to roll me into the Medical Center in a wheelchair. The Rheumy then up me to 30 mg, I then got some relief and was on 30 mg for about 6 weeks. Before I was PMR pain free, then started to reduce. I now will not reduce until pain free for a week or two. And I want off this Phredsone, more than you could imagine. Listen to your body!
Agree with Michdonn, you need to take enough pred to get the inflammation under control, stay there for a bit and then start a SLOW reduction. You could try 25mg for a few days and see how it goes?
I would suggest after a couple of months if you REALLY aren't much better there has to be a pretty high suspicion that whatever it is you have it may not be PMR. You should have achieved something like 70% improvement in your symptoms within a week or two at most. Even if the dose is slightly too low you should be significantly better in 2 months - a study found 75% of patients responded as expected within a month to a starting dose of 12.5mg/day.
Unless of course you are trying to do too much - you have to manage the PMR too by pacing and avoiding activities that cause pain. That does mean changing habits of a lifetime sometimes - but it does often work.
Thanks all. How do I feel? The biggest symptom is pain on even pretty modest exertion. The pain is mostly in my shoulders and between them, also in my hips. Also fatigue and sometimes general malaise.
For example I walk about a third of a mile up a modest grade between my office and public transportation. By the time I get there I usually have significant shoulder pain.
I don't want to give up work! I have had to virtually give up my sailboat, because I suffer for a couple of days when I wrestle with it even at a pretty modest level.
Happily I've never had the really debilitating stuff -- days in bed or in a wheelchair for example.
Maybe noteworthy as well that I weigh a lot, so perhaps I should be on more than 20 mgs. Seeing rheumy for the first time in a week or so.
Hi Joe, sorry that you've joined us but happy you found us, if you know what I mean! Do you find your pain is bad during the night in bed? Do you find it difficult to turn in bed with pain and stiffness or do you find the pain worse on exertion as you described? Generally PMR pain that isn't under control is bad at night, the whole turning over in dreadful pain and stiffness is a real giveaway. Pain on exertion would be also but you may have something other than PMR that might explain that. Wonder if you increased your dose by even 5 or 7mgs and see if it would make a difference. If it does you'll probably be on the right track and can also relay you're findings to your rhumy when you get to see them. Hope you can get some relief soon, and hope you're one of the lucky ones who finds a good rhumy!