High dosage again

Good! As I say get over this flare and then go slowly but surely. You mention 9mgs, well I go even slower than that, from 10mgs I have gone to 9.5 to 9 to 8.5 to now I'm on my second day into my 8mg reduction. But I spend one month on my old plus now dose, then a month to six weeks at the new low dose. My rheumatologist endorses the very slow method. Good luck, Christina 

All the best Jo, regards christina 

I too have a flare up for last 3 weeks was off Pred altogether but now on 2mgs daily Was trying to keep to that but Doc says blood test and bag to 5 possibly if not improving.I am very still legs and shoulders first as I get up in morning but by lunch time all stiffness gone.A bit reluctant to up Pred but weary of pain and stiffness in morning. Seeing a Rheumy today over hand problems. Blood test to morrow .Will decide then I think .

Hi I always feel better about lunchtime. But can feel the pain coming back during eve so difficult to egg comfortable and very stiff and painful in mornings. I didn't want to up theorise bug ja suppose it's better to get some pain free time if it works this time. Hope u get on ok Beatrice.

Hi Bob I do hope one day to be pain free.again.  I have been pain free, it was last Sept, it took me 2 years to come off them, started at 20 mg. but by Nov  of last year my psr had gone up again so had to start back on 10mg, which obversely was not high enough. 2 months off the pred and pain free. Was short lived but wonderful, best wishes 

Hello Bob, I understand your worry absolutely regarding the side effects of prednisolone but all the same, recovery from PMR is not a race. As Eileen says, it came when it wanted and it'll go when it wants to!

many patients are never entirely pain free whilst on preds. I am very lucky in that I am so identifying flares is easy, but for those of you who are never totally pain free you must learn to recognise when the everyday pain of PMR turns into a flare. For example, if whilst you are on one dose you suffer 50% PMR pain, if you reduce to your next pred dose and the 50% pain level after a couple if days increases to 60% then 70% etc then that tells me you are beginning to experience a flare and as much as none of us like to increase our dose of preds you may have to and quickly in order that the flare is kept under control.

remember that blood tests are not 100% accurate, so just because they say they are within normal range it doesn't always mean that. Eileen for example has had PMR for over 10 years and not once has her inflamatory markers ever been raised. 

Please bob, just be careful and if at any point you really do feel as if the PMR background pain is getting worse do consider upping your preds to get the inflamation back under control. Also I sort of follow Eileen's dead slow and almost stop method but I only ever reduce by .5 and not 1mgs. All the best, christina 

Hi Christina,

Yes, I understand what you are saying and do appreciate your advice.  

In the end, we are all on a very personal journey aren't we.  We take in as much info as we can and then do whatever we think is the right thing for US.  

As so many of us say, thank goodness for the people on this forum.

 

But the catch there is that by being set on reducing and not increasing by a small amount when really it is needed you always run the risk of a full-on flare and return to the top dose and starting over again. So saving 1mg now may mean being back to 15mg or even higher to control a flare. - exactly what you didn't want to do and the doses at which you are more likely to develop problems.

Often the pred doesn't work the same with a flare but takes a bit longer. And not everything is PMR - there are a few things that cause very similar symptoms and don't respond to jsut oral pred - sometimes an injection is better to get it in the place it is needed at a higher dose.

However - your complaint of pins and needles isn't typical of PMR but more in line with something called myofascial pain syndrome which causes back muscles to go into spasm and pinch nerves causing referred pain and so on. It is often found alongside PMR but responds far better to targetted local treatment rather than oral pred - cortisone injections into the trigger points which are in the shoulders. mid back and lower back, in each case alongside the spine about 2-3 inches away.

I have always found Bowen therapy helps a lot too - non-invasive and you don't need a doctor to prescribe it, just you have to pay the sessions of course. You know within 3 sessions at most if it is going to help although you may need a few more for best results. Often just one session will make a difference. It may not get rid of all the pain but getting rid of a fair bit makes such a difference. Quite a few people on the 3 forums have tried it and found it has helped.

Oh Jo, as Eileen says often flares are much harder to pull back and control, I know because when I had my flare in December last and I went back up to 10mgs it definately took at least 6 weeks to get all the inflamation back under control. Also as Eileen says many of us suffer from multiple medical problems, and some of those problems may not respond to preds because they are unrelated to inflamation, so although you are worried that the preds have suddenly stopped working, perhaps they haven't are are happily controlling the inflamation that's causing some of your pain but as I said are doing nothing for the unrelated medical problems.

however, I would be worried too if my Dr wanted me off preds as quickly as he now wants you off them, after all 2 years to be treated for PMR isn't that long and you only had to up the preds following a reduction from 10 to 7.5 which as I said at the time was too great a drop and I think it was that drop that caused the flare not the fact that you don't have PMR and or the preds no longer work. Eileen, what do you suggest re the weaning off of preds? Regards, Christina 

In terms of stopping pred altogether after a relatively short course he's using a perfectly normal scheme. I'd hope he might slow down when he gets back to 5mg though because it is such a short time since Jo finished pred the first time round and has been back on pred for a while. Most experts reckon it takes at least a year to get things back to normal after stopping pred. 

And of course - this is effectively a relapse so could behave totally differently from the first lot. It does happen. If things get a lot worse as you reduce the pred dose I'd also hope he would change his mind.

Is this a GP Jo or is it a rheumatologist?

It's a GP

Before I was diagnosed with PMr

 I was given 6 lots of cortisone injections and that didn't work either. Also I paid out nearly £300 for massages and that made it worse.

In PMR massage would make it feel worse. Bowen is very different and won't release the cytokines into the system which is what massage tends to do. Did you have no improvement at all with cortisone injections? That is often how PMR is diagnosed - a random cortisone injection for shoulder pain and all the others aches and pains improve.

That aside - you need a specialist now, your GP is out of his depth. So might a rheumatologist I suppose but there is a chance they may have a broader view.

No improvement at all with cortisone.. I was diagnosed with PMR as I was unable to move my arms up or down or move my neck. Was as stiff as a board in soo much pain and never stopped crying

In that case it is unlikely to be the PMR we talk about here. But PMR is only the symptom of an underlying disorder and there are several things to rule out and that should be done before deciding it is PMR, especially if corticosteroids don't get a good result. One is vit D deficiency - has your GP checked that? Or it could be purely mechanical. 

I do hope you get an answer soon.