When to taper down?

[HamishPMR]

Help again please. Does anyone have a clever system to know when it is OK to reduce your prednisolone dose. Presently, every morning I record how I feel. Firstly, "I can live with this", secondly "Not so sure" and lastly "Shit!". I have been waiting about 6 weeks between reductions but now that I am on 3mg/3.5mg alt days, I seem to be in the "Not so sure" camp more frequently and, surprisingly, I'm not so sure.

[pmrgcavictim]

Hello HamishPMR. In my opinion, if you are in the "not sure" region, now is not the time to drop your dose. I would give it another week, or two, until you are sure you are ready for the next drop. Trevor.

[SheffieldJane]

Your system is pretty good. It sounds like you need this low, relatively harmless, dose for now. It is always a bit of a gamble, however, you soon know if you’ve over-reached. It is never really clear cut.

At 4 mgs, I feel more tired and systemically unwell than in definitive pain. I am not sure how to interpret this, either.

[DorsetLady PMRGCAuk volunteer]

As such low levels I would say definitely don’t be in a rush to reduce any further for the time being.

Couple of things -

Have you requested a synacthen test to check if your adrenals are capable of working. It doesn’t show they are actually working, just capable.

Are you sure you are on enough Pred? As you were only diagnosed in February 2018 you have got to 3-3.5mg very quickly. Might be worth try a few days at 5mg and see if that helps. Probably not want you want to hear, but for the sake of a few mgs, why suffer unnecessarily when you may have the answer in your hands? Or at least in your medicine cabinet.

[HamishPMR in reply to DorsetLady]

As always DorsetLady, thank you for taking an interest. What does one do with the result of an SST? I had never heard of it and having Googled, I am none the wiser.

[DorsetLady PMRGCAuk volunteer in reply to HamishPMR]

It just tells you if your Adrenal glands are capable of working. - they will have “switched off” when your Pred was higher than 7.5mg and sometimes they take a bit of nudging and cajoling to start up again.

If you are only on low dose then your Adrenals need to work to take the level of cortisol back up to the level we normally produce without the steroids (7.5mg or thereabouts). If it’s too low you feel fatigued and sometimes lightheaded or nauseous.

[HamishPMR in reply to DorsetLady]

So, are you saying that if the adrenals are not working well enough one should increase your pred dosage? Generally speaking I feel fine; I am not tired and it is only first thing in the morning that I presently feel the shoulders and hips symptoms, but not seriously. I am 76 and still a lot fitter than most of my chums. Again, I suppose, as a pharmacist, the last drug I want to take is prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to HamishPMR]

No not saying you should increase Pred unless you have PMR symptoms. But for some people they can’t always tell whether it’s PMR or sluggish Adrenals causing the problem.

I found between the doses of 6mg down to 3mg - despite only reducing 0.5mg a time and using a slow taper - felt quite fatigued at times - and I know that was due to Adrenals taking time to kick back in. Not surprising really had been on v.high doses for GCA - and about 3 years into treatment by then.

The only way to get them going is to go really slowly with your tapering - this may give bit more info -

healthunlocked.com/pmrgcauk...

As for not taking Pred perhaps you should read this -

healthunlocked.com/pmrgcauk...

Just as an aside Pred saved my left eye after my right had been lost due to late diagnosis of GCA - so I’m pro Pred, not anti! Horses for courses.

[PMRpro Ambassador in reply to HamishPMR]

No - only being on slightly too low a dose will stimulate them to start working properly again.

As someone with a broad background in medical science - there are a lot of drugs that I find infinitely more scary than pred used carefully and sensibly.

[PMRpro Ambassador]

One top PMR rheumy likes to keep patients at 5mg for months, up to 9 months at times. The rest of the reduction then seems to go more smoothly - both PMR-wise and adrenal function-wise.

But unless you have consistent "I feel pretty good" you should consider another reduction carefully. Even "I can live with this" is a dodgy basis for another reduction step!

And when DID you last feel "pretty good"?

[Hildalew]

What are you feeling on those 'I can live with this' days?

[HamishPMR in reply to Hildalew]

From 5am, slight stiffness and shoulders achy, BUT, compared with many folk of my 76 years, I can live with it if it means getting to a lower dose of prednisolone.

[Hidden in reply to HamishPMR]

That's ok until the soreness and aches develop into a full blown flare and you end up back at 10mg or 15mg. Better keeping the PMR soreness and pain under control even if it's only 0.5mg higher.

[Hildalew]

As a 79 year-old, I too, am fortunate to have far fewer physical issues than many of my contemporaries- just some joints that make a daily, seemingly random, decision whether they are going to ache a bit - and I am prepared to live with that until they seriously impair my mobility.

I also realise from being on this forum, that I am hugely fortunate to have 'only' PMR. I was diagnosed in October 2018 and am still hovering around 9.5mg. Only my impatience has prevented me from, possibly, being a bit lower. On two or three occasions I have felt so good at a particular dose that I have dipped too quickly and consequently spent longer going back up and settling again.

These days, if I feel anything that isn't joint pain in the areas where PMR was focussed, and I can't explain it by recent physical exertion, and I have recently tried a .5mg step down, I immediately step back up again.

The thing I fear most about my condition is a flare, with anything resembling the excruciating pain and immobility I suffered last year. - I understand from posters' experience that a flare may well occur when those little bits of inflammation, not dealt with by the Pred dosage, and which people have put up with because they were bearable, tip the switch again and revert to being full-on PMR.

I have read nothing on this forum, or in linked articles, that leads me to fear prednisolone in the way that you appear to, so I have no problem with upping my dose a smidge.