First, many thanks for such a great source of advice and community.
Second, I was diagnosed just under 2 years ago. Started at 15mg now down to 1.5mg and as stated here many times, it's getting pretty tough to get any lower. I am also now experiencing somewhat different symptoms - more about pain and stiffness in wrist joints and fingers, rather than any big muscles. Does that surprise anyone?
Finally my wife is 50 in December and has just been potentially diagnosed with.... PMR!! Guess what - she's been put on 15mg Pred. But her particular issue is lack of mobility and function in walking, especially uphill - but less about general muscle pain and no significant inflammatory markers. Could this be PMR. Any thoughts?
Many thanks to all involved again.
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Klammer
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As you've been diagnosed with PMR for about 2 years, my guess is that it's still quite active, which is maybe why you can't get below 1.5mg. Two years is usually the minimum time for PMR, although as we often say men do seem to come through this better than ladies. So maybe you're being a bit ambitious with your reductions.
Looking at your original post you commented then on wrist/hand problems as well, so that could indicate you are going, or about to go through a flare. Depending on how difficult things are, I would suggest it might be sensible to think about a small increase to see it that helps. The dose you're on now is minimal so a small increase isn't going to give you anything in the side effects department, but may be enough to make life more comfortable.
As for your wife's diagnosis - possible, but would suggest a bit more investigation may be needed. Lack of mobility certainly could be PMR, but walking uphill could be more of a circulatory problems, and the lack of raised blood markers and no general muscle pain, plus age makes it's less likely - not unheard of certainly, but more a maybe than a definite!
Good luck to both of you, and hope she gets a positive diagnosis soon, whatever it may be.
I echo Dorsetlady's good advice that you may need to slightly increase your dose for a while to see if your hand pain improves - to be at 1.5mg in under two years is no mean feat but it may mean that inflammation is not quite controlled but still simmering away underneath. If an increase in dose improves things, then you will have your answer. Meanwhile, try not to overwork those hands too much if at all possible.
What a bummer if your wife is also confirmed to have PMR - it wouldn't be the first time we have heard of a husband and wife so affected, unfortunately. It is possible to have normal inflammatory markers and still have PMR. If her symptoms improve vastly (at least by around 70% within a week or two of starting the steroids), her GP will probably take that as confirmation of PMR diagnosis. Having said that, occasionally some patients need a slightly higher starting dose, say 20mgs, to get control. If her symptoms don't improve, then obviously she will need further investigation. Good luck wishes to both of you.
After two and a half years with pmr,. I had got down to 4.5mg, and then got hit in my wrists and fingers ( for the first time), and it turned out to be my first flare.
On advice from PMRpro, I went up to 7mg, which sorted me out. Subsequently, I am down to 6mg, and am biding my time now before tapering any further.
You've done well to get down to where you are in a relatively short time, but don't forget that PMR has a mind of its own, and won't give up before it's ready!!!
Funny - my husband claims he caught atrial fibrillation from me!!!
Everybody is different and without a lot more details it's hard to say if it is PMR.
Otherwise - not a lot to add!
I definitely had lactic style thighs going uphill and upstairs - but at rest too. Pred has pretty much stopped at higher doses but came back on lower dose. The pains in arms similar in feeling and tender to touch. dx pmr
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