@Blosson20 ‘s recent post struck a chord and I’m in a similar position I think. I’d really appreciate thoughts before I visit the surgery tomorrow.
I started on 15mg pred a year ago. Tapering to 7mg at the start of this year but all got worse (at the time I had my vaccine, Dupuytren's op and my parents not well - both now diagnosed with dementia). Back to 10mg and felt good again.
GP rang a couple of months or so ago just as I was starting a DSNS taper to 9 mg. He was happy with what I’d done but suggested if in a similar position again then a blood test to check inflammation would be in order before upping the dose.
So now, my leg and hip pain has been getting bad again. So I have an appointment for bloods tomorrow.
I’m not sure what I want (apart from the obvious of no PMR or pred). I know the pain isn’t as bad as before I was diagnosed and it creeps back slowly. I’m now recognising it as like the original pain. I’d really appreciate thoughts.
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Hi there, we started our journey around the same time. It seems we have both reached a point, where PMR has decided to rear its very ugly head again!I haven't had anywhere near the stress you've encountered but found I've needed to go back up to 7mg from 4.5mg to get things back under control.
I agree it would be useful to have bloods before increasing Pred dose but if like me, you've never had particularly high inflamatory markers then it really doesn't prove much.
I haven't any advice for you, I'll leave that to the experts. Just wanted to give you my sympathy and wish you all the best for getting things under control again x
Hi, sorry to hear you're in trouble! It's not easy is it? It sounds as if all those difficulties when you started to taper earlier on caused too much stress on you, so good that you went back up to 10 and felt stable again.
Now if you're ok you should be able to do a slow taper but the leg and hip pain are saying 'No'!
Do you think the pain is like the original Pmr pain, or could it be a problem (arthritis?) in the hip joint?
Have you got a rheumie? Or an osteopath or physio would be able to tell too.
I'm sure you've read here about some rheumies (Bristol?) keeping people on 10mg for a year so you could stay on it until you feel better. Certainly there's no point in reducing while you're feeling pains returning.
Have a chat with the Gp anyway and have the blood test and go from there.
I'm sure you'll get some more good advice on here.
In a flare situation, then symptoms are the real key, and may be corroborated by a blood test…but the blood test should not be the deciding factor. Unfortunately many doctors think it should be, but as we all know that bloods lag behind symptoms, and as already said aren’t always raised in some.
Would suggest, that once you get back on track…maybe try 0.5mg reductions from now on as well…and maybe use a slower tapering plan- belt and braces approach!
It may seem a longer way to do things, but if it stops flares then it’s worth it in the long run - various tapers available - see link -
Yes my GP agreed the inflammatory markers might not be raised but if they are then that does give some confirmation. He has also supported my slow tapering (I use one of the ones from here). But I think I will try the 1/2 mg drops as you suggest next time.
With that dollop of stress your GP needs to be looking at more than one thing. And realise that it isn't just a consideration of inflammation which may not show up in bloods for some time when you are already on pred.
You may need more pred to compensate for the blunted adrenal response - I do. I also had a flare after my second Moderna shot, was OK after the first - but only went back to 15mg from 13mg which I was trying out again after repeated failures before.
But my problem getting down from 15mg is the stress of being a sole carer which doesn't go away. I don't know how much you are involved in the care of your parents - but having a diagnosis of dementia and all that involves is a major stress and you have had an op as well.
Well I’m waiting for the blood results which may or may not be available tomorrow. In the meantime, I had the most dreadful night last night. As bad as before diagnosis although it improved once I was up and moving. I stuck with my current dose of 9mg today in advance of the bloods.
It’s now 6:30 pm and walking is really hard. I haven’t done much today except 8K steps but nothing strenuous - just life! But the current feeling in my upper legs and arms feeling really heavy combined with the pain last night really do confirm PMR to me.
So my question of you knowledgeable people is do I just up it to 10mg tomorrow and see how it goes? Or do I go higher? And how long do I give the increased dose?
I have an appointment with the GP (face to face!) next Thursday but I have to do something before then.
Think I might cut the steps - 8000 is quite a lot! How much you will need is hard to say though. 10mg would be a start but the most likely success would be with 15mg until it is looking good and then reduce to 12,5 fairly quickly and hope.
I thought you might say something about the steps! But it definitely wasn’t strenuous - just a lot of very gentle walking (OH wanted to go lots of shopping and he has a dodgy knee so can’t walk fast at all!)
It isn't just strenuous activity - and personally I found slow walking with my OH was far more tiring than walking at my normal pace - which also is no longer particularly speedy ...
Quick update. Two days of taking 10mg again and I’m feeling good. Cut my steps to a mere 7,600 (it ended up at nearly 12,000 on Thursday. Two nights of sleeping has helped and although not entirely pain free at night it’s been so much better. I’m thinking I need to stay on 10mg for a while. And when I do reduce next, will do so by just 0.5 at a time over several weeks.
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