Tapering after getting to 5mg without issues. Getting down from 5's turning out not to be so straightforward. Rheumo (first contact and have never met) said to alternate days 5mg and 4mg for a month, then 4 then alternate, etc.
Within just a few days of alternating 5/4 I got pain in my neck and just my right arm. From what I've read, one element of PMR is that it affects both sides. Is that always the case?
I've given it 10 days alternating, but can't even raise my right arm enough to brush my teeth, so have gone back to 5mg.
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Hercules307
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PMR is usually bilateral, but can start on one side and then move across... but are you sure it's not caused by something else. see how it goes..
Maybe when you try reducing next time try only 0.5mg a time [plain white tablets can be cut - piller cutters are readily available] - and one of the slower tapers as described below - most find them easier on the body that the alternate days system that some rheumies favour -
Hello DorsetLady, I followed advice and going to 4 1/2 made a big difference. Then my GP surgery chased the Rheumy referral they'd requested when I was diagnosed a year ago and the reply was to alternate 5 and 4. I'm away for a while but when I get back I'm going to push for a face-to-face (that'll be the first) as phone consults for this really don't work.
But I do have to get prescriptions from them. I've been lucky so far and have got scripts via the practice pharmacist but last time I asked for one for 5 he said the doctor had said no more. It was only because I was going away that I managed to get them. Definitely going to have to have an educational appointment with a doctor.
If you are supposed to be reducing 4 one day and 5 the next then the prescription should reflect that… so you should get enough Pred to cover 28 days or whatever. So taking 4.5mg per day is going to be virtually the same…
Unless you are saying the GP will not supply 5mg any more and only supply 1mgs… if so then you need to -
a. Go back to Rheumy Dept and say the 10days of 4/5 didn’t work, and
no. Tell GP the same and say you’ve contacted Rheumy.
Whatever your rheumy might think - you are never tapering the pred dose relentlessly to zero, you are seeking the lowest effective dose for YOU at any given time. You start with a dose that is likely to be more than you need (sometimes it isn't) and then you taper it slowly to find the lowest dose that works for you. However slowly you taper you won't get below that amount at any given time - getting stuck at 5mg as you have is a good result so far after barely a year. The median time to 5mg is 15 months. It doesn't mean you won't get lower, just not yet.
Pred cures nothing, it clears out the accumulated inflammation and then the lowered dose deals with the daily dose of new inflammation created each morning about 4-4.30am. If the dose is even slightly too low, there is some inflammation not dealt with and, over time, it will build up, like a dripping tap will eventually fill a bucket and overflow and you will have symptoms again. PMR lasts quite a long time - the median is said in one study to be just under 6 years, the 2 years quoted by so many rheumies is pie in the sky for the majority and you cannot just taper to a set timetable to fit that 2 year claim and get off pred without often running into trouble,
We don't like the alternating dose to taper, especially at the lower doses, as it seems to confuse the body. We have developed slowed taper steps which are in the FAQs, under Tapering, and which lots of people have used successfully to get to lower doses. But even they won't get you below that lowest effective dose.
You complained of depression at 4mg a few months ago - is it still depression that plagues you at 4mg or is it more a return of PMR symptoms. The only real way to get through the depression aspect is to take your taper VERY slowly and persist to encourage your adrenal glands to wake up from their hibernation, It can be very hard we know but going back up doesn't prod them to wake, you have to get the other side of it. If it is PMR symptoms returning, then you have to be aware of whether the symptoms are increasing and threatening a flare - if that happens then you may end up having to go even higher to get things under control again. So do look at it all quite closely - plenty of people here to help you sort it out.
Very grateful for your advice. The depression went as soon as I went back to 5 and fortunately has stayed away. The pain in my neck and right arm is very much the same as when the PMR first hit. I went back to a constant 5 a few days ago and it's certainly easing.
Which suggests you were flaring - try a few days at 10mg and then drop back to 5mg, That will clear out the inflammation faster and is the standard way of dealing with a flare.
I also have shoulder pain on one side only, but the sensation is different from PMR pain. More like a cricked neck. Not the burning sensation I got with PMR, and the other shoulder is pain free. So although this has been with me for a couple of months, I don't think it's related. An anti-inflammatory gel seems to help slightly.
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Is this a flare? Pain on only one side.
Hip pain on one side - is it PMR?
What is this one sided, morning hip pain?
Right sided 'joint' pain
One arm and shoulder very painful, but not on the other side.
