Polymyalgia pain ..........

Karen, I salute you. Positive thinking based on reality. I'm following suite as is being said why suffer. I've clanked around all day popping extra pain killers and feeling horrible AND it's Christmas. So tomorrow it's a little more for a little less. Let's give it a try. My wife will be delighted to get rid of Mr Grumpy over Christmas . . . . . .

Well good for you.  I am a newbie PMR and am on 20mg of pred.  I am not and will be in no hurry whatsoever to be reducing pred.  When I am being reduced my measure wil be pain.  We get no medals for suffering and like yourself will be taking what works for me.  It is early days for me and this forum has just been great.  Just you do what works for you.  

I do wish that these docs who hand out a fixed reduction scheme could understand that everyone is different. Whether it is the activity of the illness or our response to pred or just "me" - we are all different and a far more personalised approach is needed.

In PMR the only effective pain-killer is the pred. As you get to the lower doses you need to slow down - not least because the boddy has to catch up with having to make cortisol to replace the pred that had taken over its role.

I keep plugging the paper you will find a link to in this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

They would still have you on 10mg after a year - and their scheme reduces the flare rate to 1 in 5 instead of 3 in 5. Once you start flaring and yo-yoing the dose youa re in trouble, it gets progressively worse. 

The most commonly suggested way of dealing with this is to add 5mg to the dose where you have problems. Once the symptoms have gone again, then start to reduce SLOWLY - at first 1mg at a time, preferably spread over a couple of weeks and sticking there for a few weeks to make sure it is OK. As you get closer to the point you had your flare- be very aware. Half a mg at a time is better and be very alert. If pain comes back - up to the previous good dosage straight away and stop there. 

Once a flare has set in you have to get rid of the symptoms - so don't hang around wondering if it will go away or you will get to a stage where it is difficult.

 

Those reductions are pretty harsh! Go back to where you were comfortable and wait for a while before reducing again

Thanks for your information, I found it helpful.

Pattik

There are 82 listed side effects of pred. No one gets them all, some people get almost none. Some gain weight, a few lose weight. I was pretty much OK with the first sort of pred I had, just the excess weight I'd gained whilst too immobile to exercise properly redistributed itself. Then I was switched to Medrol (not used in the UK much) and gained weight big time, developed a beard and my skin and hair went mad. I was switched to another form - and all those reversed and I have no side effects worth mentioning now. Everyone is different.

I hope he just means he's taking a year to find the right longer term dose and not going to aim to get you off pred in a year - that sort of rushing leads to trouble.

Thanks for the reply, I am going to consult with him again before getting on meds. But need to get out of pain.

Try cuttings carbs drastically - several people have found that helps avoid weight gain, I have lost 17kg while still on pred, albeit a different sort to the one where I put the weight on and I have also reduced the dose from 15 to 4mg. I eat very little bread - half a roll is usual - and little pasta, rice, potatoes - they are treats and only ever a small portion. I eat NO processed carbs - no snacks, no cakes and so on. I can't eat wheat anyway, I get a nasty eczema, so it is easier perhaps for me, aversion therapy! I eat loads of salads and veggies and meat and fish. I get all the carb I need like that - and the piece of high quality chocolate, at least 75% cocoa solids 

And by the way, when I started I couldn't walk more than a few hundred yards as I was on crutches with an achilles problem.

Sorry to find someone who has had it even longer than me - 10 years - but I am nothing like as bad as you. The highest I have been is 20mg of Medrol but that was more because Medrol just didn't work for me. I switched to a different form of corticosteroid and went straight to 15mg with far better pain relief.

Is your rheumy sure it is PMR? Has he ever tried you with any of the DMARDs used for RA - some of them do achieve good results in some people, allowing them to reduce the amount of pred they need. I ask because it is unusual for patients with just PMR to need 50mg pred.

And a happy Christmas to you too 

When I saw the Rhumy Last week for the first time he said older people get PMR I am 49 and I know I have had this going on for a long time now. My MD just kept treating me for depression I can't even count how many times I saw her until she sent me to the specialist!!!!

I should have said sorry it was put up high when I started to get Giant cell artritis which is a very bad eye infection which goes with PMR and glaucoma which I have. yes I think over the years I have had all sorts of tests to make sure its PMR I do wonder sometimes  but you have to believe the consultants I suppose .

If you had said GCA I wouldn't have been surprised at the dose - but I still wonder if what you are suffering now is still "PMR".

There are no tests that can say for certain it is PMR - and it and some forms of other inflammatory arthritis can appear identical, even down to the blood test results but would respond better to using DMARDs. That's why I ask.

The guidelines say PMR should be considered in patients with the appropriate symptoms who are over 50 - but that is only since last year, before which it was 55.

That doesn't mean that younger people don't get it but that is what the doctors often believe - so when a younger patient appears it isn't considered. They will diagnose depression, menopausal symptoms, other forms of arthritis and fibromyalgia is, of course, the final get out since it is almost impossible to treat - particularly if you offer the ?fibro patient lyrica which won't work because it does nothing for PMR. 

In the last 6 months or so though we have seen more and more people in their 40s whose doctors are prepared to consider PMR and have tried pred - and, of course, it works!