Correct level of Pred?

[Jancy2]

I can’t find the answer to my question on the site so apologies if it is there somewhere.

Diagnosed early April 2023, responded immediately to 15mg Pred, what a relief that was!

Developed headaches & ended up in front of consultant rheumatologist. No GCA.

However, cons has kept me under his wing for now but….. has prescribed what seems a very fast taper. I’ve nearly done the first month 15mg to 10mg. The next phase is 10 to 5 over a month!! That won’t be happening. Seems he wants me off steroids asap. GP feels 1mg per month slowly from 10mg is way forward. Having read everything I can, I can see that is the approach and what I’ll be working towards.

However, I don’t know if I’m ready to work towards 9mg.

How do you know you are currently on the correct level of Pred? When I wake up in the morning I’m stiff, have aches and pains in various places; slightly worse than when I was alternating 15mg/10mg for 2 weeks. Now on only 10mg for 2 weeks, when this kicks in I feel like Wonder Woman.

So, is the correct level expecting to be in some discomfort early morning but how I feel when the Pred has kicked in or am I supposed to feel good all the time?? I can’t quite work this one out from everyone else’s information. Basically I’m trying to figure out if I’m ready to taper again to 9mg.

TIA

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes a very fast taper to date- surprised you managed 15-10mg - that’s bonkers really…so no surprise you made following comment -

When I wake up in the morning I’m stiff, have aches and pains in various places; slightly worse than when I was alternating 15mg/10mg for 2 weeks.

It is natural to be a bit stiff first thing in morning, but you shouldn’t be feeling worse now than you were during your taper… that indicates you may be heading for a flare. And the problem you have if that’s the case you don’t know what dose to take as your baseline to return to. Would you have been okay at 12.5mg? - unfortunately you don’t know because that dose was bypassed.

The ideal is to feel as good at each taper as you did on the initial dose - doesn’t always happen, but that’s the aim.

Can only suggest you stay at 10mg for at least another a weeks and see what happens…. You may stabilise, and then be able to continue your taper - and yes agree with GP on that….or you may end up flaring and having to go higher.

Don’t know what guidelines your consultant is following but it isn’t the recommended ones -

This is tapering regime from guidelines -The suggested regimen is:.

Daily prednisolone 15 mg for 3 weeks.

Then 12.5mg for 3 weeks.

Then 10mg for 4–6 weeks.

Then reduction by 1 mg every 4–8 weeks or alternateday reductions (e.g. 10/7.5mg alternate days, etc.)

*However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

[SnazzyD]

Did they say why you need to taper so fast? Do they think you don’t have PMR either?

[herdysheep]

I was led to taper too fast in the early days before I found this forum. After several flares I went more slowly after 10mgs but was 'stuck' there for a while. I found .5mg reductions more successful. If the stiffness wears off as the day goes on, it may be as the pred takes effect. If you take enteric coated, it takes a bit longer to be effective. The time you take it can be important too.

It is difficult in the early days as you start to recognise the different things going on and how you feel. Your GP sounds a bit more in tune than consultant! There is always a listening ear here.

[PMRpro Ambassador]

Since you have only been on pred for about 2 months you should be able to taper like that IN TERMS OF ADRENAL FUNCTION if that is what your consultant wants IN TERMS OF THE GCA he says it isn't,

But what about PMR? Because that is what it sounds like. And in that case you will need the pred - enough pred to manage the symptoms. What is sounds like to me is that 10mg is still enough because you feel like WW once it works but the antiinflammatory effect isn't lasting the full 24 hours until the next daily dose is due. Then you might benefit from splitting the dose so it is working around the clock.

He says it isn't GCA - but what causes the other symptoms? Is he taking the risk of losing control of the PMR in order to see it in all its no-pred glory to do other tests and rule out PMR too?

[MarionA]

You are not alone. Exactly the same thing has happened to me, new with PMR. The GP told me to taper from 15mg straight to 10mg after 4 weeks. Once on 10mg my symptoms started coming back over 3 weeks. Thankfully I spoke to another GP looked at the NICE guidelines and clearly said I had missed out a step and has given me 12.5mg. Why do some doctors deliberately ignore guidelines to put us in a position which delays our recovery? My next step, of course, is to change my named GP.

[PMRnewbie2017]

As you are new to all this you may benefit from taking your Pred at 2am ish. There are several posts about this. The reason is because the inflammatory chemicals are released at 4am so if you are not taking your Pred until breakfast time, say 8am, that's 4hours in which the inflammation establishes and you waken with pain and stiffness. You might like to look at the 10% rule too if you are not familiar with it. In the early days it's trial and error to see what works for you. Keep a daily diary too of dose, time of dose and symptoms and your activity level. You will find it helpful especially when you have Dr appointments. I have all my notes since 2017!