Hi gumnut, well done for getting a rheumatologist to back your ideas. It sounds to me like the reduction has been too fast and the steps a little big. Once people get below 10mg it's recommended that you slow down to 10% drops every 4 to 6 weeks. At what dosage did the pains return? Usually it's advised that you return to that dose, let it settle and then do a slow taper. There is a post in the pinned posts that suggests a few slow taper plans. Perhaps you could ask your rheumy if you could follow one when your symptoms settle. Good luck.🌻

I think your problems stem from the rather large tapering steps you were told to take. Thirty is a bit high to start, but not really "high" dose, relative to what people take for other conditions, although only for a short time. But a drop of 50% was much too much to do overnight. Did you feel okay at 15 mg? What happened between 15 and 10? Were you at 10 for four weeks and still okay? A taper of 15 to 10 is 30%. It's advised that one should not taper more than 10% at a time. This helps in a number of ways. It helps avoid steroid withdrawal which feels a lot like PMR itself and can be confusing as well as unpleasant. It also prevents you from overshooting the lowest possible dose which will still control your symptoms. Pred doesn't cure us, it merely damps the inflammation to prevent damage and give us quality of life. Eventually in most cases PMR burns itself out, and often by the end we have managed for some time on a vanishingly small, but still necessary dose.

Hi,

I can understand (although maybe not totally agree with) the drop from 30mg to 15mg - which incidentally is the normal starting dose for PMR.

However the tapering regime since is not good, many struggle to go 15-12.5-10mg in stages let alone in one fell swoop.

I would suggest that by reducing from 15mg to 10mg in one step you have passed the amount you actually need, but unfortunately you have no way of knowing what that figure was/is!

As HeronNS asks - How long were you on 10mg? And did you feel okay?

If you were, I would suggest going back to that - for 4 weeks, and then reduce more sensibly - 1mg every month, or even 1mg every 2 months - as recommended in the guidelines.

Six months in, your PMR is still very much alive, so there is no point in rushing your taper - as you have already discovered.

It took me 4 years of steroids (a total of 9 years of PMR) to reliably get under 10mg.

Every morning a new batch of inflammatory substances is shed in the body. The dose you are aiming for when tapering is the lowest dose that gives you the same result as the starting dose and which mops up the inflammation caused each day. However you reduce - whether it is 10% or more or less, nothing will get you to lower than that dose although smaller steps do seem to allow you to creep down, sneaking under the radar!

You have got there - for now. Wait a few months at 9mg and then try a 1/2mg reduction - it might work and then you can try another. But don't force it and don't be despondent because it is only a temporary blip if you are sensible. But if you try to force it, you will let in a proper flare up and you will be heading back where you started and have to do it again. Often that is harder - and you don't want to go there.

I'll go into the causes another time - suffice it to say your immune system has been attacked and has flipped out. It may be one massive attack or it may be a load of straws and one finally broke the camel's back, But it wasn't your fault - or anyone else's. It is what it is ...

Hi Gumnut. Many of our community have said they think physical and / or emmotional trauma (bereavement) played a part in triggering their PMR.

As the others have said your taper eventually was too much and too quickly.

If you felt fine at 10 mg , you could increase to that figure , get your feeling of " wellness" and a little strength back then use the slow taper that all the members have suggested so far.

The tortoise wins the race rather than the Hare with PMR .

I see you are like many of us and struggling with trying to work out why it all happened.

Many have mentioned Stress , but did you know that Stress is not all bad but good things too.

I wrote a post about it last week that you might find below you search for answers to the Big Why ? in a different way.

If you press on my avatar and name at the top of this reply , it will take you to my profile page and it's the first post you will see , I hope it helps.

Take care and take it slow , hugs , Bee x

Also bear in mind that when you drop, even by a little, you can experience several days of pain from the steroid withdrawal. For me that usually lasts 4 days. Then it eases up. You may also find that you need to slow down a bit with activity. It’s easy to think we are all better and overdo it when we still have the underlying condition. I too was very active prior to my dx and have had to very slowly add activity back.

Thank you Cranberry. You are you to have a dx of PMR and sorry it has affected your life but its a temporary blip and we'll all get there. What dose are you on now? Do you still exercise. I only walk on days I am able. But it does improve my wellbeing. I've always been on the move but learning to chill out! Have you ever had improvement with natural anti inflammatories like ginger/Manuka/turmeric. 🌻

Hello Gumnut,

Sorry to meet you here....not where you'd really want to be.

However, it's a fantastic place as you've discovered.

I have nothing to add to the amazing advice you've already had.

I am currently stuck at 8mg x6 +7.5 x1 after horrible things a few weeks back.

Monthly blood test results due tomorrow and I suspect I'll be staying at this dose.

Bon courage as they say here in France.

Oh and walking poles, I have some AND I find my shepherds crook much better for me.

Bon nuit Ida'mum. Lovely to hear from you. Not the place any of us want to be but at least PMR is treatable and hopefully shortlived unlike some diseases. I hope your present dose pf Pred is keeping you symptom free. I have learnt very quickly thats its imperative to reduce very gradually and that is the only way to go. As well as rest! Of course I had no idea doses can differ on days a week to reduce at snails pace. I have not had much guidance from my GP.

Bon chance demain. 🐴🌹