When tapering should we be pain free?

[Lafete]

Good morning all. I would be very gr3for your comments again please.

I am nearly 3 months into post diagnosis beginning of taking pred and I'm curre8tajubg 10mg daily (down from initial 15mg).

My question is I was almost pain free on 15, not too bad on 12 but been in some pain on 10 (been on it for about 3 weeks now). Am I aiming for pain-free before tapering?

Just had another blood test to check inflammatory markers and will be see3ny GP in a week to review.

He, and I, are obviously keen to reduce the pred but I'm concerned now that I'm going too quickly. On one level I don't see the point of being on steroids if I'm in pain! Or do I neec to accept a level of pain in order to taper?

He's a very good GP so I know he'll listen to me.

Many thanks for your thoughts

[Hidden]

Hi lafete, you are aiming to feel like you did at 15mg. Did you do 1mg drops which is the best way to know what dose helped and which dose didn't! Obviously this has the caveat that you contact Dr ASAP to say you are flaring. I found going back to the working dose was great, but I did 3 days at plus5mg to clear up the building inflammation then back to what from you would be 12mg. There's no problem dropping back like that after 3 days. Tell Dr no point taking 10mg with pain when am extra 2mg stops pain. I hope that helps. 😉🌻

[Lafete in reply to Hidden]

Many thanks. I will definitely be talking to my GP.

[DorsetLady PMRGCAuk volunteer]

Hi,

As Poopadoops says you are not relentlessly reducing to zero...you are trying to find the LOWEST dose that controls your symptoms.

As you mention 15,12, and 10mg - were those your tapering steps? If so, I would say two things - a) probably too big a step, 1mg per time would have been better, and b) undoubtedly you didn't stay at each dose long enough to know if it was really sufficient before you reduced.

“Almost pain free on 15mg” - really at initial dose you really want it to be better than that, although not everybody can achieve it. But perhaps you weren’t on it long enough?

As you say, no, point in being on Pred if it’s not working - you need to speak to GP, and if he’s as sensible as you say, he realise you need to go back up.

We all want to be off the Pred, but it’s not as easy as that! PMR and lifestyle has a lot to do with it.

Have a look at this, might give better idea of what’s ahead -

healthunlocked.com/pmrgcauk...

[Lafete in reply to DorsetLady]

Many thanks for your reply. I will read and absorb.

[PMRpro Ambassador]

You are almost certainly being forced to reduce too quickly/too soon. If you were pain-free at 15mg you should still be the same level of free from pain now.

Most good taper plans would have kept you at 15mg for 6 weeks, 12.5mg for 6 weeks - and one particulalry good approach then keeps you at 10mg for a year. By doing so they found they reduced the rated of flares from 3 in 5 to 1 in 5:

rcpe.ac.uk/sites/default/fi...

It was written for GPs - so yours shouldn't get upset about being given it to consider. Here on the forum we believe that using an additional taper approach spreading small steps over a few weeks can reduce the rate of flares even further - PROVIDING you listen to your body and DON'T taper if you notice any return of symptoms but wait a bit. Flaring more than once at a given dose is a sign you may be at your destination: the lowest dose that gives the same relief as the starting dose did. That isn't the same as tapering to zero come what may.

A fairly recent piece of work found that low dose pred as used in PMR is not as bad as many doctors think with the incidence of so-called pred adverse events being similar in both patients with PMR on pred and an age-matched population with no PMR and no pred:

medpagetoday.org/rheumatolo...

No reduction step in a taper (again, not the same as reducing pred to get off it altogether, 5mg at a time is fine there, but in tapering you are likely to miss your destination dose) should be more than 10% of the current dose for success - at 15mg that is already only 1.5mg by 10mg it is 1mg. So 1mg at a time from 15mg on is better and is not slow when it works better, avoiding having to go back to the beginning.

[Lafete in reply to PMRpro]

Many thanks that is really interesting and informative.

[Cyclegirl54 in reply to PMRpro]

I’m going to use some of these points at my dec 17 rheumy appointment. I’m currently at 14 mg and going into third week tomorrow. Last few days have experienced increase in headaches and arm pains - hope it’s not a flare coming . Have another bout of Costochondritis too which isn’t helping! Keeping myself in check at the moment as much as possible and Not planning to rush the tapering. I’m reducing 1 mg at a time. 🌸

[pmrgcavictim in reply to PMRpro]

Good morning PMRpro. Started with PMR June 2018 had a good journey ( by the usual standards) with my PMR, then also GCA a month later, except for the GP hiccup, 15mg Pred 1st week, then down to 10mg, we know how that went. Then I found this forum. It's been fine since I gained the knowledge, many thanks for your part in that. I have now reached the 10mg mark, and seen your post above, that mentions 15mg, 12.5mg then 10mg for a year. Is this a new approach worth trying, or should I stick with the slow reduction that has worked well so far, except for some of my many years of other pains before PMR that have been creeping back on the scene. Trevor.

[PMRpro Ambassador in reply to pmrgcavictim]

If the slow reduction is working why change? It does mean that a lot of patients probably do get to a lower dose sooner and means less grumps from a GP

The Bristol paper isn't a new approach, the paper was published in 2012 and Kirwan's group in Bristol had been using it for some time before presenting it to the GPs in Edinburgh.

I think the Bristol approach reduces the flares because they aren't pushing patients to reduce at a stage where the underlying a/i part of PMR is still quite active. DSNS and the other slow tapers reduce the flares because we encourage the patients to be very aware of changes in symptoms and not to push a reduction. Also reducing in the sudden steps doctors usually use is more likely to cause steroid withdrawal pain which has frequently been thought to be a flare and so the doctors put the dose back up unnecessarily. DSNS does all that is possible to avoid such confusion,

Doctors look for speed of reduction - we look for successful and pain-free reductions!

[pmrgcavictim in reply to PMRpro]

Spot on with the last line. I SHALL be sticking with what has worked for me so far. I extend the time I am at a new lower level, 8 weeks at 11mgs, until it feels right to drop again, done this since I was at 15mgs. I can't imagine that the GP or Rheumy would approve, shame, it's me with PMR/GCA not them. I will be reducing by 1/2 mg from this point on, had one flair at the end of week one, on my unwanted journey, not going to be another if I can avoid it. Thanks yet again for your wonderful advice. Trevor.

[Arflane97G]

I am in 3rd week of 9mg, down from starting dose of 15 mg in September. Get about 80% relief atm which is pretty much normal for me, Hardest part is first week of reduced dosage but I make sure that I get plenty of rest and yoga really works for me, take care f yourself