Pain relief

[jules1955]

PMR PEOPLE

What do you take for pain relief ?

How often do you take it ?

Does it work for you ?

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I just take prednisolone and am lucky enough that I experience no PMR pain, just a little morning stiffness. Before diagnosis, I took a cocktail of paracetamol and ibuprofen but they didn't really seem to make any difference - the only thing to relieve the pain was a warm bath.

[DorsetLady PMRGCAuk volunteer]

You asked about increasing Pred a couple of days ago - so have you?

If your pains are definitely PMR, then not much else will help. However if they are add-ones like bursitis etc then pain killers might, so a bit more info might help us to decide and advise.

[jules1955 in reply to DorsetLady]

Hi DorsetLady, I am going to wait until blood tests next week before I increase my dose. I have been on 5mg for a couple of months, down from 7mg for about a year.Does nothing else relieve PMR pain ? ( apart form Pred )

[DorsetLady PMRGCAuk volunteer in reply to jules1955]

No, not if it’s PMR - many try all sorts before diagnosis - paracetamol, ibruprofen etc with very limited success.

Plus of course you shouldn’t use any NSAIDs (ibruprofen, aspirin etc) when on steroids.

You may find paracetamol or heat treatment on specific areas does give some relief...

...but you really need the correct level of Pred to control the inflammation (which causes the pain).

[jules1955 in reply to DorsetLady]

So really when you are tapering you should hopefully be pain free- I didn't realise that as the Doctor has given me pain relief ( co-codamol ) in the past which I just assumed was to help with tapering. When I started to reduce my dose I thought it would be so easy.

Is taking 7mg of Pred that bad in the long term if you are in less/no pain and more mobile ?

[PMRpro Ambassador in reply to jules1955]

Not that bad - and it is likely it will get lower in time, just not yet. And yes, when tapering you take the level of relief you got with the starting dose as a guide - you shouldn't have more PMR discomfort at the end of a taper step than you did at the beginning. So if 15mg leaves some pain, it is a good idea for the doctor to try 20mg to see if it improves it, but some people are never entirely pain-free. Then you taper the dose to find the lowest dose that gives that same level of relief.

[jules1955 in reply to PMRpro]

Thank you x

[PMRpro Ambassador in reply to jules1955]

PS - a couple of mg of pred is probably safer than constantly taking cocodamol with its risk of constipation or addiction or NSAIDs with their adverse effects.

[jules1955 in reply to PMRpro]

Yes - I don’t like taking pain killers x

[DorsetLady PMRGCAuk volunteer in reply to jules1955]

Well you obviously don’t want to be on Pred longer than necessary, but honestly not being on enough is counterproductive- if you have add in other medication.

I know you’ve been on Pred for a long time, but so have others, PMRpro is a prime example of her PMR being a long-standing variant....and I think sometimes that flummoxes GPs because it’s not acting as they expect it to.

Around 7mg is the level of cortisol that your own body would normally produce on a daily basis, so it’s not an horrendously high dose that’s going to cause much damage, but it probably means that your own adrenals may not think they have to function. So very often it’s a difficult dose to get below....and reducing can be a lot more difficult than we, or doctors, think.

The general idea, sorry if repeating what you know, is that the initial high dose mops up all the built up inflammation - so hopefully you are painfree. - not always 100% but pretty close.

Then you need to reduce slowly to find the lowest dose that give you the same relief....that’s usually relatively easy to start with, but as you get lower it becomes more difficult because each taper (whether it’s 1mg or 5mg (GCA doses) becomes a bigger percentage of your current dose....and the recommendation is no more that 10mg.

So for PMR patients patients 10% of 15 would be 1,5mg, at 10mg would 1mg, but at 7mg would be 0.7mg - so for ease 0.5mg.

I found with my GCA it took nearly as long time wise to reduce from 10mg to zero, as it did to get from 80mg to 10mg.

My view would be back to 7mg to clear up existing inflammation- if that’s what it is - give it at least a month and then try reducing by 0,5mg and using slow tower - if not already - here’s just one example - healthunlocked.com/pmrgcauk...

[jules1955 in reply to DorsetLady]

Thank you x