Pollymyalgia

[lynnhanham24]

I was diagnosed with pollymyalgia at Christmas and I have been taking steroid since Christmas I my levels are still High am on 15mg and of steroid now am coming down from 10mg and I have pain in my hips legs and taking painkillers most day some days are really bad

[DogAgilityObsessed]

Welcome but sorry you’ve had to join the PMR club. The PMR experts will be along shortly to advise.

I too started on 15mg staying on that dose for two or three months. But I’d have thought you should reduce to somewhere between 15 and 10mg initially. But if you still have pain then it’s too soon to reduce at all. Maybe you even need a high dose than 15mg to kill the backlog of pain.

What additional painkillers do you take? I’ve heard you shouldn’t take ibuprofen while on pred in any case.

[DorsetLady PMRGCAuk volunteer]

Hi,

As DogAgilityObsessed says, things are obviously not under control.

You are not reducing relentlessly to zero, you are trying to find the lowest dose that gives you same relief as initial one did..assuming that 15mg did!

Have a look at this post about dealing with flares, and I think you need to go up a bit you get things back in track…can you speak to doctor…and don’t reduce any more - it will just get worse-

Will also link my general advice post - and slow tapering one -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Can you also add a bit more to profile please, helps us to understand what’s gone on, and how to help.

[PMRpro Ambassador]

How was your pain on 15mg? Was it at least 70% improved on that? When you say your levels are still high - I assume you mean ESR and CRP? What were they before diagnosis and over the last 6 months?

You shouldn't be in pain that makes you need to take painkillers - I would suspect that your doctor doesn't know what they are doing if it is PMR and there is a possibility that it might not be PMR at all. However, we'd need to know a bit more to add to our suspicions.

[piglette]

If other pain killers are working well your doctor should re-check it is PMR. As normally steroids are the only thing that really helps PMR pain.