Dose Reduction

[UmiMck]

After 2 years and 3 months have got down to 2.5 mg. Tried a few times with very slow taper and can’t get below 2:5. Get sore hips at night in bed on 2:5. Energy levels are good and managing to go the the Gym for half hour. My question is do I stay on 2:5mg or go to 3 to reduce hip discomfort at night. Guess there is no point in trying to reduce at the moment. Managing to lead a fairly active life style despite the discomfort. So stay on 2:5 or up the dose

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to stay put for now….but you could try returning to 3mg and see if that makes any difference - it’s such a low dose anyway- and as many know, 0.5mg can make a big difference.

But if you don’t have any other issues are you sure your knee pain is PMR? Or is that a typical signal for you?

[UmiMck in reply to DorsetLady]

Not sure whether it is a typical signal for me. My PMR journey has been relatively event free and have been able to maintain a reasonable level of fitness. Felt great at 5mg and stayed there for quite a while just having slight niggles as I got lower

[DorsetLady PMRGCAuk volunteer in reply to UmiMck]

having slight niggles as I got lower

Well maybe that was telling you a bit too low-I know it’s difficult at lower doses to be 100% sure what are PMR niggles and what are normal niggles. Sometimes you have to experiment a little - if painkillers help probably not PMR whereas if they don’t then it probably is!

So maybe try that - and if you think it’s PMR -then by just upping by a mg may sort it.

Don’t ignore it and hope it will go away…invariably it doesn’t-and you’ve done well to get where you are, so don’t ruin it now.

[UmiMck in reply to DorsetLady]

Thank you. Will go up to 3mg and see how things go

[SnazzyD]

Hello, are you sure it’s PMR for certain? I’ve just come out of a few months of hip pain, first one, then the other, then both. I was beginning to wonder if I had PMR now. Anyway, the osteopath has gently helped the muscles and ligaments to sort themselves out and PMR is off the menu again. In return I stopped the exercises that I had been doing most days for the last 2 years which helped and putting a thin cushion between my knees at night. Looks like my body is getting fed up with the daily specific tweaks and I have had to change my routine. You say that you are active despite the discomfort, so I ask if you are pushing through anything. Also, are you going to the gym daily?

[UmiMck in reply to SnazzyD]

During the day I feel ok. I can kayak about 16 klm once a week and have started gym a couple of months ago to do light weights. Also do yoga once a week. No pain at all during the day just when I go to bed. Gym is only 3 times a week and working with an exercise physiologist who is very familiar with PMR. Sometimes I wonder if I still have PMR if I can go all these things at 72

[UmiMck in reply to SnazzyD]

Thanks. Will explore the Oestopath pathway

[SnazzyD in reply to UmiMck]

It’s a case of working out if your Pred level is too low for the PMR or your muscles and ligaments are becoming more prone to upset because of the Pred over time, or both.

[UmiMck in reply to SnazzyD]

That makes sense. A bit of juggling act. Thanks for taking the time to reply

[PMRpro Ambassador]

If 3mg really makes the difference I'd do it - I too get stiff hips in the early morning some mornings and they are gone later. No idea what that that is about!

To be that low after just over 2 years is excellent - 1/2mg is neither here nor there.

[UmiMck in reply to PMRpro]

Thanks. Will try going to 3mg to see if it makes a difference. Just questioning if I still have PMR as my activity level is pretty good for my age. How long do I stay on my current dose.

Have been through the fatigue stage and all seems normal at the moment

[DorsetLady PMRGCAuk volunteer in reply to UmiMck]

Month or two - then try again - but using a slower tapering plan if you haven’t already - examples here-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to UmiMck]

You will know if you still have PMR by tapering the dose slowly to zero and staying off it for 6 months or so without symptoms returning - as long as you are on some pred you can't be sure. The disease activity can be very low and even 1/2mg of pred can be enough to contain low daily levels of inflammation but without it the level builds up until it is enough to cause symptoms.

[UmiMck]

Thanks. Will do. Have a good day

[Davidj16]

I know people who have had PMR for twenty years and are still on 5 mg prednisone daily…these rhumys that think we can taper quickly do nothing but bring us pain