How long does it take?

[KerryIreland]

Advice? Finished taking pred 3 weeks ago and symptoms have come back. It took 10 months to go from 15mg but I had many side effects so am “putting up” with the pmr and hoping it will gradually go away (with occasional paracetamol) Anyone in a similar situation? KerryIreland.

[PMRpro Ambassador]

Only 1 in 5 patients diagnosed with PMR gets off pred in a year. The median duration of management of PMR with pred is just under 6 years. If your symptoms were back in only 3 weeks it sounds as if the PMR is still alive and well and the more likely result of not going back onto a low dose of pred asap is that over coming weeks the symptoms will ramp up until you are as bad as you were pre-pred. I had PMR without pred for 5 years, I wasn't diagnosed, and I wouldn't recommended it to anyone. I will never go back there however long I must take pred.

If you got down to 1 or 2mg and have been OK it suggests that is all you are likely to need - IF you get it under control quickly. If you leave it before accepting it is still there it may be a very different story. What side effects bothered you most? I had some very unpleasant ones when I was on methyl prednisolone - but I never thought of stopping pred. I switched to prednisolone and the side effects are minimal or manageable. Most of them are when you know how.

[DorsetLady PMRGCAuk volunteer]

That’s your choice of course, but a small dose of Pred will give little in the side effects line, but a great deal of relief. “Putting up” with PMR is not recommended for lots of reasons - and will make life miserable.

It will go away on its own, but nobody can tell you when.

PMRpro has given good advice- as always.

[Maisiek]

Prof Dasgupta now errs towards possibly keeping people on a low dose long term- maybe 2.5mg.

[TheMoaningViolet]

Hi KerryIreland, I have been on steroids since December 2019 (started on 15mg) and I am in the week 7 of reducing them down to 4.5mg; this is considered to be very good progress. I have managed to reduce without any flares so far and what I recognised as familiar PMR pain in the background (I was 90% pain-free before this point) has more or less disappeared once I reduced my steroids to 5mg back in October 2020. I get a bit tired sometimes and have a bit of discomfort when I am tapering, but am able to live a completely normal life in the meantime as long as I look after myself, which involves sleeping well, eating well and exercising moderately. I am not sure how long it will take me to stop the steroids, but at this rate, it may be as long as another year, but I am on a low dose already and reducing so slowly that it barely impacts on my life. I would recommend this approach.

[piglette]

If you seem to be flaring I think in your position I would go back to taking pred. You are putting yourself at risk of getting GCA and going blind is not something I would like to happen to me.

[PMRnewbie2017]

Putting up with the pain and muscle soreness is one thing, but remember the illness if untreated is causing damage to your blood vessels. You may also develop a type of anaemia associated with inflammatory disease. If your occasional paracetamol is providing relief, do you actually have PMR? Paracetamol or ibuprofen type medicines will not block the biochemical reactions which cause the pain of PMR.