What are the chances of finally geting rid of the PMR?

Martin

The answer is "Yes". But (there's always a but"!) Many of us find that we hit a brick wall at the 5mg point. I stumbled there and had to increase back to 10. My rheumy then guided me back down via alternating does of 10 and 7.5 followed by 7.5 and 5mg, and once back at 5 he kept me there for 5-6 months which made sense as I'd had a massive flare at that point previously. With hindsight it was a great idea as it really seemed to stabilise the inflammation and from there on (5mgs) I was able to reduce smoothly to zero. And here is the "But". I then reduced at a snail's pace, cutting my 1mg tablets in half and reducing to 4.5 on just one day of the first week, two days of the second week, three days of the third week etc, taking seven weeks to reach 4.5. I then repeated this routine down to 4, and so on to zero. As I said, a snail's pace but it worked and that's the main goal at the end of the day. Remember that the lower you get on the doses, the higher the percentage drop and the more adjustment for the body in withdrawing the steroid.

Ignore what you have read about PMR going away after 2-3 years. For some lucky people it does but we are all slightly different in both our response to the illness and to the treatment. It took me 5 1/2 years on treatment (6 1/2 years including a year spent undiagnosed and therefore untreated).

Hope this helps and that you will eventually be "clicking your heels" again.

Very interesting to read how you decreased your Prednisolone Mrs O. I always got stuck going down from 5 mg. I hope this slow decreasing helps you Martin. My Rheumatologists have said that the Polymyalgia should go away. I never had the conclusive diagnosis that I think you have had over the 4 1/2 years. I was prescribed 20 mg steroids which worked immediately on my shoulders. From then on I decreased and got myself off them. But with flare-ups, went back on.

What has happened is that during the last five years, what I mistook to be Polymyalgia in my hips and legs, has in fact been degenerative Spinal Stenosis. I have only just found out this Spring because of a change in GP. I had an MRI scan which shows as bright as day that a lumbar disc is bulging out into the spinal canal and compressing all the nerves which pass through. I have been quite stunned at the clarity of the MRI and am now scheduled to have an op in August to decompress the nerves. I would probably never have thought I had anything like this without the MRI scan. I remember Eileen H, I think, saying to another contributor to this site that sometimes she wondered if there was something else at the bottom of all these aches and pains.In my case - there is.

All the best to you and I hope you can click your feet and even dance for a good time yet Martin!

Cosima

Hi Cosima

I guess there will always be a certain amount of incorrect diagnoses until such time as a specific test is available for PMR. What a stroke of luck that a change of GP has resulted in further investigation and a definitive diagnosis for you. Good luck both with the op next month and for a pain-free future.

Hi Martin and welcome!

You don't say what sort of rate of reduction you use and having to jump from 5 to 10 and even 15mg does suggest you are not going about it in the best way. It is acknowledged by experts that the most common cause of a flare is reducing too far or too fast and there is also a problem in that some people suffer with pred withdrawal problems which manifest as aches and pains similar to those we have with PMR. Several people on the various forums found that reducing at the rate their doctors told them to simply left them in pain again and they had to up the dose.

Some doctors are under the impression that pred in PMR is to be used the way they use it in other illnesses - but that is a taper of 5mg at a time and in PMR that is very often far too large a step at once especially below 10mg. The recommendation is that a reduction should never be more than 10% of your current dose. That is 1.5mg at a time from the start of 15mg - although many patients manage 2.5mg at a time down to 10mg. Below that it should never be more than 1mg and even that is more than 10%. At 5mg you need a reduction of 1/2mg at a time. The patients who had had problems reducing in larger steps have had far more success once they made the steps much smaller.

I have always struggled to reduce but at present I am taking something like 6 weeks to reduce by 1/2mg and so far it is working well (touch wood!). I do it by taking the old dose for 6 days, new dose for 1 day, old dose for 5 days, new dose for 1 day - reducing the number of days between the new dose by one each time. At 3 days between new doses I do it twice, at 2 days 3 times and then stick at alternate days for a week or so. If that seems OK I start on the next 1/2mg in the same way. I hope that makes sense - a table might be easier but I have no idea how to put one in! You don't have to take the same dose every day, especially if there is only 1mg difference anyway, but many people don't appreciate that and it does make reduction steps smoother.

Another misunderstanding is that when you reduce from the initial 15mg dose you are not aiming for zero straight away. You are looking for the lowest dose that deals with your symptoms effectively. The pred has no effect on the underlying disease process that causes the symptoms - there is currently no cure for PMR - and is reducing the inflammation that causes the swelling and pain we experience. The lowest dose might be 10mg at first - and one group in Bristol keeps their patients at 10mg for a whole year before continuing the reduction and by doing so find only 1 in 5 patients experiences a flare, compared to 3 in 5 with more usual reductions. This seems to get the inflammation properly under control - if it isn't and you reduce the dose it will just flare up again like a fire that has been smothered but then some air gets to it.

But you might need 8 mg - and reducing to 5mg in one go is simply too much. Going down 1mg at a time means at 8mg you are OK, but at 7mg you start to get some warning symptoms and can hop back to 8mg and be fine. If the inflammation gets going again it seems to be more difficult to reduce the next time - although taking a higher dose for a few days often works well and you can go back to the last dose at which you were fine.

As Cosima has said - there is always a problem as you reduce wondering is this the PMR or something else. What she has, the spinal stenosis, is quite often found in patients on steroids but can happen anyway and needs identifying and treating properly. So never accept excuses for a new pain, all too often the doctor will try to tell you "it's the steroids", "it's your age" or some other evasive comment. If it is new and different - insist on being taken seriously. In her case it could be the steroids - but it is something that shouldn't be left but dealt with.

Only about a quarter of patients with PMR are off pred in 2 years and they are at a high risk of relapse later, a half need pred for 4 to 6 years and the other quarter need pred, albeit at a low dose, for even longer. By my understanding of arithmetic a quarter is hardly a majority so why they tell us it lasts 2 years or so I fail to understand. My theory is that most patients who believe the doctor when he tells them it must be something else when it isn't better after 2 years just disappear off the radar and accept being stiff and in pain as our grandparents did, accepting it to be part of getting old. PMR will sometimes go into remission on its own - but who knows if you are going to be the 2 year version or whether, like me, it will still be there after 9 years! I managed with no treatment other than acquaaerobics and Pilates for the first 5 years - for the last 4 I would have been in almost constant pain and in a wheelchair for much of the time without pred.

Eileen

I am so pleased to have found this forum - I almost cried with relief when I realised it's normal to have relapses and that PMR doesn't necessarily go away after two years. I have been on preds since January 2011 and had two relapses which depressed me no end as I feel I am just wasting my retirement - I'm now 65. So here I am taking 8mg a day which just about keeps me OK - problems come back big time when I get down to about 5mg. After reading the posts I am going to reduce my preds dose slowly, slowly, slowly. I have acupuncture which helps and try and eat all those anti inflammatory foods.