Tapering

[Yorick123]

I notice that some need several attempts to taper down to a particular level of pred at which they are pain free. Thus they may experience pain having twice gone down to say 5mg, and have to go back up for a while to 8mg. However, a third and later attempt to go 5mg and remain pain free might be successful. Is this because PMR is weakening with time and slowly going into remission, meaning that less pred is needed to keep the pain under control?

[DorsetLady PMRGCAuk volunteer]

There are a variety of reasons why people struggle with tapering. But as time goes by your PMR should lose its potency.. problem is no-one can tell you how long that will take.

The initial dose of Pred prescribed is more than you should require on a day by day basis…it’s having to get the built up inflammation [pre diagnosis] under control as well as having to control the daily shedding of inflammation- which happens as long as you have PMR.

Once the built up inflammation is cleared, then you reduce slowly to find the lowest dose that controls the daily inflammation caused by the underlying illness. Taper too fast, and the Pred dose is too low, expend too much energy [mental or physical] and the Pred won’t be enough.

And sometimes, the time just isn’t right to reduce [for example winter weather may put extra stress on your body].

It’s not an exact science… and what looks an achievable taper on paper and in your and your doctor’s mind, might wlll get railroaded by that thing called ‘life’.

[Yorick123 in reply to DorsetLady]

Thank you so much, very helpful.

[PMRpro Ambassador]

It is possibly one reason. I think - and I am not alone - that the disease activity falls and rises again and again over time. If you plotted a graph you would get a sine wave with ever decreasing amplitude, the peaks getting lower and lower. Taper too fast and you may get to a lower dose on a downward section only for the activity to ramp up again and more pred be required as it goes up again.

[Yorick123 in reply to PMRpro]

Many thanks, I can really relate to this and it will be at the front of my mind as I taper down.

[Dochaz in reply to PMRpro]

This is my experience too. Wavering levels of disease activity, and it's very tempting to start a new taper on a good day, only to find a week or two in, that it was wishful thinking. I have (last year) tapered to 2 mg only to find that the inflammation builds up again and symptoms return, so back up to 4 mg again for the moment. It's not easy to find your liveable level of Pred. Not easy either to decide when to start a new taper. There are good days and less good days even while on a stable dose.

I think it's a question of trial and error. And not letting the symptoms build up over too long a period so that a full-blown flare doesn't develop. Fine tuning!

[PMRnewbie2017]

Ditto to the above and also, we don't live in a vacuum or a perfect world. Life has a habit of throwing curve balls at us which also upset the apple cart so to speak. I can be jogging along quite nicely but anything which causes me stress can muck it all up and require a temporary increase in Pred or a cessation in the taper.

[Alchemy8]

Such a helpful thread. So agree about the ups and downs. I was on the edge at 8.5 and had to hurriedly go up again to 9. I am now on 10 and wonder whether I shouldn't go higher as have stiff shoulders and and hips are kicking in as they did at the beginning. Plus knees. And of course incipient osteo diagnosed in hands and feet. Not much pain there.

Also was rather bemused this am to spot that my fingers were orange coloured as indeed my feet and a red area above. They've gone back to normal now. Anyone had this. Looks like bad blood flow or Blood Stagnation as the Chinese label it - one of the hazards of increasing age.. Any ideas anyone??

[DorsetLady PMRGCAuk volunteer in reply to Alchemy8]

Palms of hands -soles of feet affected?

see this - verywellhealth.com/carotene...

[Alchemy8 in reply to DorsetLady]

Thank you DorsetLady. I haven't changed my diet, had a recent blood test last week that was fine re sugars etc.. Perhaps could be Kidney related?? I''ll check tomorrow am to see if it appears again.

[DorsetLady PMRGCAuk volunteer in reply to Alchemy8]

Hmm me neither-perhaps you could attach a photo so we can have a look.,,

[Alchemy8 in reply to DorsetLady]

It isn't there now. It went after I had got dressed. There seemed to be an orange vs red area! I will if it reappears tomorrow!

[DorsetLady PMRGCAuk volunteer in reply to Alchemy8]

I meant if it reappears…😊 if it was just red it might be easier to identify-an allergy or something. But the orange has me interested if bemused 😳

[Alchemy8 in reply to DorsetLady]

Like an overdose of tumeric!!

[DorsetLady PMRGCAuk volunteer in reply to Alchemy8]

🤣😂 .. so long as it’s not an American presidential candidate fake tan effect.

[Alchemy8 in reply to DorsetLady]

Nope not a Trumpian coloration! Well it is all a bit vague. Nothing as strong as that first day, I have been checking but nothing that could be recorded photographically. Was it the orange dhal from the previous day's lunch?? I will keep an eye and report if there is any serious manifestation plus photos of course!

[DorsetLady PMRGCAuk volunteer in reply to Alchemy8]

Orange Dahl?

Could be I suppose… how strange, maybe you’ll never know…but then again….😳