PRED tapering

I lost my first attempt at a reply trying again I have been pain free on 15ng discussed with the GP and he advised tapering but only 1 mg at a time I plan to reduce 1mg a week I am now on 13 mg maybe 2.5 mg you reduced is too much in one go?

[SnazzyD]

1mg sounds like a good plan but not once a week. Why? If you go too low for your current inflammation it can sometimes take a week or two for it to build to pain levels. So say you drop to 14mg and that is too low, but it hasn’t showed yet as pain and then you get on to 13mg or even 12.5mg, when the pain kicks in, you may not know whether it was 14,13, or 12.5 that was the step too far. You may end up having to go up to 15mg again when actually all you needed was to go back up to 13mg say. It also works the other way. you need to be well clear of the withdrawal zone so that you aren’t guessing as to whether your niggles are in fact just withdrawal or a flare of PMR. Personally I did no more than 1mg a fortnight at any point but did it by drops of 0.5mg per week to make it feel smoother because withdrawal was a problem for me. If any withdrawal hung on I didn’t reduce until it was clear and occasionally this happened because I’d over done it or was unwell.

[PMRpro Ambassador]

One mg a week is far too fast - you are not reducing relentlessly to zero, you are tapering to find the lowest dose that manages the symptoms as well as the 15mg did. So early in the illness it might be 12mg you need for now or it might be 8mg or even less - but by reducing so fast you run the risk of overshooting as it may take a week or two at the new dose to know if it is still enough. Reducing at a rate of more than 1mg per MONTH is said to be predictive of a flare.

As someone said yesterday - this is a marathon, not a sprint. All that happens if you try to rush at the tapering is that you end up in a flare with no idea at what dose it all went wrong and having to go back to the beginning to get things under control. And when that happens a few times it get harder and harder.

[Hidden in reply to PMRpro]

Thanks for the response it is helpful I am very positive and basically don't want to accept the condition I was planning to taper to zero and "be cured" optimistic or what? I will slow down based on your observations thanks

[SnazzyD in reply to Hidden]

That’s a common and understandable thought, but having it backfire will be much more of a setback than having to go slower than you want.

[PMRpro Ambassador in reply to Hidden]

Join the club!!! But I fear realism wins out here!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Nobody really wants to accept it - but you might as well, it’s going to be your companion for a little while yet 😉.

Best way to go is to accommodate it, not necessarily befriend it, but don’t try and rush it away too quickly. It has a habit of outstaying its welcome if you do that.

[piglette in reply to Hidden]

Our long term aim may be to reduce to zero, but our short term aim is to reduce to a dose that is still comfortable and is the minimum for us at the time. 15mg to 12.5mg works for some and is too much for others. Whatever you reduce you really need around four weeks to see that the reduction agrees with you. You may have some PMR type pains a day or two after you start reducing. This would normally be steroid reduction problems and should ease up fairly quickly. If you start PMR pain a week or two after reduction you have reduced too far and you will need to increase a bit again. The secret is not to reduce so this happens.

[Blossom20 in reply to piglette]

I too am reducing and probably going a bit too fast. I've only got to 13 from 15, but yesterday my legs were so tired and heavy I had to keep stopping and sitting down. Do you think this is steroid withdrawal or pmr pain? How can you tell the difference? I have no pain as such, just weakness and aching - as if there's no energy getting through to my muscles.

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

Steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some, it can be eased by paracetamol.

A flare can take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis. Paracetamol will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

[piglette in reply to Blossom20]

If it happened just after you reduced it is probably steroid withdrawal. If it happened a week or two after reducing it is probably that you have reduced too much for the time being.

[alangg]

The method that worked for me:- use a taper plan such as Doset Lady's DSNS plan and never more than 10% reduction so that your body has time to get accustomed to the new dose. And stay on the new dose for a week or two before starting to taper again. Get some 1mg tablets and a pill cutter so you can make some 1/2mg tablets to achieve the 10%. And be prepared to go back up if you find that, after a week, the new dose is leaving you with more symptoms than the old dose.

Good luck!

[Hidden in reply to alangg]

Thanks your suggestions seem eminently sensible regards

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

healthunlocked.com/pmrgcauk...

[Coffeebeans]

Please go slower as the others have said. You risk ending up having to go back up higher as a result of trying to get a flare under control.

It's really frustrating but don't ruin your good work so far!

[Loyd]

1mg a week drop is too fast. I was on 9mg after slowly coming down from 15mg but panicked when Covid came along and asked my doctor how fast I could reduce - she said 1mg a week. I did that but by the time I was on 3mg I had a really terrible horrific flare which has stuffed up everything!! I am now on 30mg to get it under control. Take care and ca canny.