Polymyalgia

Hi and welcome!

The problem you have is that you are trying to force your reductions. The pred does not cure the PMR - there is no cure, it can only be managed. The PMR is not the disease - it is the description of the symptoms: many painful muscles. This is caused by the swelling due to inflammation caused by an underlying autoimmune disease which makes the body's immune system attack your own body. If you are lucky that will burn out at some point and you will go into remission - but you have to be patient.

The relapses are being caused by you trying to get to a dose that is not high enough to control the inflammation and that allows the symptoms to come back. The idea of the reduction is to find the lowest dose that controls it and it sounds as if, for you at the moment, that is about 5mg. That doesn't mean you won't get lower than that at some point but for the present you need to stay there for some time. In addition, once you have been on steroids for more than a couple of months your adrenal glands need some time to start working properly again as they sort of go into hibernation whilst you are on a dose above about 8mg/day as that is about the same amount the body would produce of cortisol, the natural equivalent, and the message is sent to the adrenals not to produce more. It is the excess you need to control the inflammation that causes the side-effects.

Research has shown that about a quarter of patients are able get off steroids in less than 2 years but they are much more likely to have a relapse later and have a second attack. Another half take from 2 to 6 years but are less likely to relapse long term and the rest stay on steroids much longer, sometimes on a low dose for life. So rushing this isn't a good idea. Also, if you yoyo the dose as you have been doing, it makes it progressively more difficult to reduce the dose - no one knows why though, just is so.

Many doctors recommend staying on 5mg once you have reached it for anything up to 6 months before trying another reduction. This seems to work quite well for a lot of people and is probably because it is less than the body would produce naturally and it allows the adrenal glands to start working properly again - a sort of staged return to work after sickness! Even after you stop taking pred altogether it takes them a year to be fully functional and be able to respond fully to stress and that is why you need to carry the blue card and tell all healthcare providers you are/have been on long term steroid treatment even after stopping pred.

You should also really only reduce by 10% at most of your current dose - and although that is 1mg at 10mg/day, by the time you get to 5mg a 1mg reduction is 20% - it needs to be 1/2mg and you can get a pill utter from the chemist to do that - only for the white tablets, never cut enteric coated tablets, the red and brown coloured pred pills. Some people need to take even smaller steps at low doses - but that is still in the future and someone will tell you all about that later - this is enough for now.

I have had PMR for 8 years, 5 of them mildly and undiagnosed as my blood readings have always been low. I've been on pred for 3 years and can't get below 8 to 10mg/day. There are many people out there who have been exactly where you are - you are by no means the only one. The first thing you need to do is accept is that pred is not an enemy - it is what gives you a decent quality of life. Also, if you have untreated or inadequately treated PMR you are also at more risk of developing GCA - a very different kettle of fish which you may recover from faster than PMR but you run the risk of losing your sight if it affects your temporal artery - the one along the line the side of your glasses covers. Even when you are taking pred there is a chance of it developing but less of one and if the symptoms appear - headache, visual disturbances, feeling ill - you need to see a doctor immediately, today not tomorrow.

Have a look at the other forum which the link is given for in one of the Pinned headings at the top of this discussion forum where you will find hundreds of members, many of whom post regularly, and a whole load who know what you are going through. There are also contacts for real life support groups and there may be one near you - and meeting real people with the same problems helps loads.

Eileen

i can not add to eileens fantastic response , but will add my experience i tried to go down to quickly and got to 9mg with all the symptoms coming back i had to go back to 12.5 mg before i was able to cope since then i have reduced by 0.5mg about every month according to how i feel or my circumstances eg i was on holiday when the reduction was due so i waited till i got back but then caught a virus so i am now reducing today to 8.5mg fingers crossed ,this small slow reduction suits me because i am less likely to miss the optimum dose that is holding this condition at present and i feel more in control , hope this helps to hear another persons experiance carolk

A big thankyou to both Eilleen and Carolk. I feel better already. I have arthritis quite badly as well, so it has been awful.The doctors here just had me on pain killers for months. I diagnosed myself as someone said I looked like her friend with my feet up and a hot water bottle and guess what she had polimylygia.Apparently there is a pocket of people around here. Where did it come from, I keep asking myself if 2010 flu jab which included swine flu had anything to do with it.I had that in the Sept. and was poorly after that.

Allich

there is no proven cause only speculation often affects previously active and well people ,i am afraid we are stuck with it but when i think how i started to now 14months on there is no comparison its not a barrel of laughs but its improving with patience and time carolk

Allich

Is you Arthritis Rheumatoid?