Sudden Flare up Help Please

[Brears]

I know I can rely on someone on this site to advise.I successfully managed to decrease to 1 mg suddenly finding it hard to manage the pains have all gone into my left leg unbearable I can’t rest during the night,Still on codeine 15 mg 7 tablets daily.Its so bad I’m unable to lift my left leg without any struggle.Today I’ve taken 2 mg should I increase more? Or see if it settles down.Had bone scan 3 weeks ago still awaiting results.Im feeling very low

[PMRpro Ambassador]

I assume you have spoken to the GP about this? It doesn't sound typical of PMR symptoms surfacing after a reduction - but more like sciatica or something like that,

If it IS a flare because that reduction to 1mg was a step too far - and therefore NOT successful - then the advice for a flare is to add 5mg to the dose where you flared for 7-10 days and then drop back to the dose where you were OK before, not the dose where you flared.

But I really think you need to talk to the doctor.

[Brears in reply to PMRpro]

Thank you for your advise I have tried to get in touch with the surgery but can’t get anyone to answer the phone for a call back.I will increase the dose to 5 mg and hopefully it helps.I was told PMG have left my body and was sent for physio which it hadn’t.

[PMRpro Ambassador in reply to Brears]

If it is PMR then the extra pred might help - but it really doesn't sound typical if it is one-sided. How do they think they know PMR is gone? The only way to know that is to get to zero pred for some months with no return of symptoms. PMR doesn't go away in a fixed time - whatever some doctors may think. Even 1/2mg can be enough to keep symptoms at bay but zero pred doesn't work.

[Viveka in reply to Brears]

If you are able to get to your GP surgery, try going at 10 to 8 and join the queue to make an appointment. If I need to speak to someone, this has never failed to result in an appointment of some sort on the same day - though this might be just my surgery.

[Brears in reply to Viveka]

Thank you I couldn’t get a reply on the phone so walked into town receptionist made me an appointment same day.

[piglette]

Is the codeine working? If so it may be nothing to do with the PMR as PMR does not really respond very well to anything but pred.

[Brears in reply to piglette]

Hi The pain in 1 leg is worse when trying to sleep codeine doesn’t really help.Increase in Prednisolone the same.

[piglette in reply to Brears]

So you are saying the steroids are not working either? Or have I misunderstood?

[Koalajane]

I suffer with sciatica and the pain starts in my buttock and can go right down to my foot. Prednisolone does not help it, the only thing that does is a low dose of amitriptyline

[Janstr]

My PMR started in one thigh that got so bad I was having to lift that leg over stiles. It was like having severe lactic acid after strenuous walking, that never went away. That was before the days when it got worse & spread through to the other thigh & through my body so I could only dream of hiking.

When I have had a flare it also started in one thigh.

[pammy_hyland]

I've never been able to get below 4 mg as I flare every time I get to 3 mg ...I've been on a maintenance dose of 4mg for years now ..Have you had a blood test ? as this will show you're inflammation level and if its a flare as it could be something else ..My GP did one each time ..

[PMRpro Ambassador in reply to pammy_hyland]

It doesn't always work - some people never have raised markers and many more don't have raised markers while still on pred, even if it isn't quite enough, or they lag a long way behind. They can also be raised for other reasons - all very confusing.

[Myfoe]

if you have only recently reduced to 1mg then I suspect it was to quick a reduction remember the dead slow taper charts seems simple to go from 2mg to 1mg when one was at 50mg at one time but withdrawal symptoms can occur one can alternate 1mg one day 2mg the next day until your body adjusts or drop only 1/4 to 1/2mg when you get as low as you are I also disagree with those who are saying PMR does not affect legs or feet I lost my ability to walk because my leg was so swollen from hip to foot until I was diagnosed and began prednisone it all went away 24hrs if you do not believe me do some searches only affecting hips, shoulders and neck is old school thinking