PMR. Prednisone, Dosing From The Beginnng

I guess I would just like to emphasize, like you do, Eileen, that when you are diagnosed you should not settle into thinking this is a two-year disease, or that you can hasten remission by tapering right away! Wish I had discovered this forum soon; I was almost a year in when I saw the slow taper method on the forum. I need to do the reLly slow taper, 1/2m at a time, spread out. Today I am managing the smptoms😊 Thank you, Eileen!

Eileen, on reading your reply here, I realise just how ignorant I am about the actual disease and the long term prognosis. This forum is helping me understand that I am not alone in all the things I experience, which is great, but I don't really understand what I am dealing with. After several very painful months and a bout of tendonitis, I was diagnosed with PMR in late 2013 at the same time as I discovered I had breast cancer. I was put on 15mg of Pred and the relief three days later was monumental. 2014 was a very difficult year, but eventually I got sorted out and got myself down to 5mg by earlier this year. Sadly I had a flare and the doc put me up to 20mg about three months ago. I am coming down in tiny steps and am now sitting on 16mg and will remain here for a month or so before coming down by 1mg again. I have arthritis in my hip and spine, so unfortunately suffer paini n my lower back and legs, despite Pred. I am now three years into this journey and despair that it will always be this way. Exercise has become very difficult and I am constantly exhausted. I have two 94 yr old parents I have to look after as well, so I have to admit to being pretty 'down'. I write all this because, I wonder, is there an end to PMR? Does the disease eventually just burn itself out, or do some people just continue with it forever? I know of a lady of 85 who has had it for 20 yrs ... scary thought. Have they done studies to find out why some people contract it and not others? Certainly not ever heard of before in my family. I am vegetarian and used to be very fit and active but in the last three or so years my life has totally transformed. Any advice, suggestions or light at the end of the tunnel greatly appreciated. 

Hi Loulie

I am 79 and have been free from pred since December 2008, so there is a light at the end of the tunnel. I found out a regime that spreads out the tapering and it has later been further developed to the dead stop method. Just choose slow tapering. Otherwise you may get a flare and then it takes longer to get off pred. Good luck

"Does the disease eventually just burn itself out, or do some people just continue with it forever?"

The answer to that is: yes. Sorry, I know that isn't particularly helpful but it is now being recognised by rheumatologists that PMR is probably not a simple single disease - it is very likely heterogeneous and that means that not only are there differing causes but also different responses to treatments. There are forms that don't respond to pred or respond less well and there are forms that may be helped by DMARDs.

It is held to be an autoimmune disorder that causes your immune system to attack your body by mistake - that is what leads to the inflammation, pain and stiffness. Pred usually damps it down and allows a decent quality of life until it burns out - according to the rheumies. But the propensity to develop it remains - you can have second episodes. Or your first one lasts a long time. At a support group meeting recently I was sitting with 2 other ladies: one has had PMR for 15 years, one for 13 and I have had it over 12 years. None of us has had a period where we could get off pred. The 15-year lady is actually on pred for life because her adrenal glands are no longer functional. She has been on 5mg, it is being considered she may need 7.5mg. Last year I got below 5mg - only to experience profound fatigue (also adrenals????) and went back to 5mg where I felt really well, 4mg was OK but not as good. In January I had a flare that definitely appeared to be affecting my chest arteries - back to 15mg and now down to 10mg. The other lady struggles at below 15mg. All of us are of the opinion that we have to live - I'm only in my mid-60s, normally I'd still be working. No doubt I could get off pred, or at least to a lower dose, more quickly but I have no desire to go through the early part of the year again - since it was sorted at a high enough dose I've been able to achieve a lot. The only problem I'm aware of at 15mg is weight gain if I'm not religious about avoiding carbs - over the last 4 months I've been travelling a lot with holidays and conferences and family visits and haven't been able to choose what I eat. Result: 6 lbs weight gain! Home now - back to my sort of food!

You don't "contract" PMR, it develops - why no-one knows, but something finally forms the last straw for an overstressed immune system and it goes haywire. The triggers are thought to be wide ranging, environmental, chemical, stress of all sorts and there is a small genetic component: Scandinavian genes figure highly (those Vikings got all over the place) but it is rarely found in people of African or Asian heritage - rare doesn't mean never though, the rates are just far smaller. That could also be because it isn't recognised, as it very often isn't recognised in under 50s because many doctors are convinced it is a disease of the elderly, if you don't look, you don't find.

If you are looking after elderly parents - I'm not surprised you are always tired. It is quite obvious from the forums that people who have to work, or its equivalent in caring, need more pred to be able to manage. You can manage a lot of PMR with lifestyle changes and that usually allows you to get away with a bit lower dose but if that isn't possible you need a bit more pred. 

Did you have any signs of the flare at 5mg in advance? To a great extent, the most common cause of flares is reducing too far or too fast. If you recognise niggles don't deny them - stop reducing and return to the last dose at which you felt good. That may be enough. It is also a shame the doctor put you right back to the start - that isn't always necessary and just adding 5mg to the dose at which the flare occurs often is enough and means the new reduction is shorter. When you get to the region of the previous flare - slow down and be really careful and watchful. You are never reducing relentlessly to zero - you are looking for the dose that manages the symptoms as well as the starting dose did. It doesn't mean you won't ever get off pred, just not yet. Rest at the lowest dose you find works - and not one that is just too low, there is no virtue in that, the residual inflammation will build up again, like a dripping tap fills a bucket, and you will have a flare sooner or later. Every few months try another 1/2mg, preferably using the slow reduction - if it works, rest there for a month or two and then try again. Below 7mg your body has to start to make cortisol again - it takes time, a staged return to work so to speak. The slower you go the easier your body will find it. Below 7mg is also a low dose, the side effects are less, and most doctors stop panicking at that level. My doctor wanted me back at 10mg by the summer - I've done that. He'd really like me at 8mg - and I'll work on that in the autumn. I'd like to be back at 5mg - but if it isn't going to happen that's fine too.

So - does that answer your questions? You WILL probably get off pred eventually - 75% of people do in up to 6 years or so. The German rheumatology textbook says 5 years or so. It is only the English-speaking community who are so fixated on the 2 year bit. I wish I understood why - I know some say it because they don't want to scare/upset patients. But it is even worse when after a couple of years they are still in the throes of PMR - they think they are to blame, that they have done something wrong and their doctors also often make them feel wrong. Then the forums have the job of explaining that the starting coordinates were wrong - that's why you are still in the middle of a field instead of on the motorway!

Eileen, and enormous thank you to you for your long and considered reply. I am extremely grateful. I have to go now, so no time to respond, but will do so tonight. Sarah

Eileen, Ok here goes. One thing that struck me was your saying that last year you got below 5mg but suffered profound fatigue so went up to 5 again and felt fine. I experience profound fatigue most of the time - I have to lie down a lot, I drag myself around painfully, and frankly feel rubbish. That in itself depresses me as it seems I rarely get a good spell. My confusion is if this is PMR related or the pain from my spine causing exhaustion. I cannot believe I need higher doses of pred, as when I get a flare, increasing my pred sorts out the pain in my top half within 24 hours, but what I live with is the numb feet, aching ankles and calf musceles, and bad lower spine pain. If I take paracetamol regularly it helps, which I assume it would not do if it were PMR, would it?

My doctor is always keen to get me off pred, as I have osteopenia (both parents have osteoporosis), however I have an annual Zoledronic acid infusion to protect my bones. I have noted your advice on reduction at lower doses, and will not push to go lower than is comfortable. I did develop symptoms around 5mg but I remember not recognising them initially as a PMR flare. I won't make that mistake again.

So thank you again for such an informative reply and your advice. It is much appreciated.  Sarah

Pacing is essential in PMR to manage the fatigue - the fatigue is part of the autoimmune disorder that causes the symptoms we call PMR. The pred doesn't touch that, it is still chugging along in the background. If you are caring for your two elderly parents as well as running your own life it really isn't pacing - and you will inevitably experience profoound fatigue. Appropriate rest is essential - and the pain is also fatiguing.

The pain that goes with more pred is most likley PMR - but the lower half probably isn't and perhaps needs a different approach. I assume you mean it is osteoarthritis in your spine and hip - is that proven by x-rays and so on? I had hip pain that I thought was OA - it was actually trochanteric bursitis and that was eventually dealt with by steroid injections - local application is far more effective than oral pred alone.

Other symptoms similar to yours in my legs were greatly helped by Bowen therapy - it won't help the PMR but it can help the add-ons a lot. I'm by no means the only PMR person to have benefitted from trying a few sessions - if there isn't a difference in 3 sessions it may not help you but it is very relaxing and some ladies have continued with it purely for that reason. There are a few threads on here with reports of success. One lady was practically confined to bed, could just get to the toilet with a zimmer frame. She got from the car to the therapy room with the aid of a walking stick in one hand (no room for the zimmer) and a friend supporting the other - after a 1 hour session she walked back to the car unaided by the friend and had to go back to fetch her walking stick! It hasn't been a permanent improvement but regular sessions now keep her upright and mobile.

You may have OA - but a lot of the back and leg problems MAY stem from spasmed muscles in the back. That was the case with me and I ended up in hospital with the pain. The local pain clinic diagnosed it as myofascial pain syndrome and used a few techniques including steroid injections into the trigger points MPS causes, manual mobilisation of them and a technique called needling. They aren't all easily available but there are practitioners who do both Bowen and myofascial release who you can go to without begging your doctor and are worth trying. Every little helps.

Thaks Eileen, all very helpful information. I have tried injections in my spine and in my hip but neither made any difference at all. However, there is obvious OA in my lower spine facet joints so am being recommended for injections in those. I will mention the myofascial pain syndrome to the orthopaedic surgeon and the chap from the pain clinic and see what they think. I will investigate Bowen too. Many thanks.

The orthopaedic specialist I had seen 18 months earlier after a whiplash injury told me my low back pain was wear and tear and I'd have to live with it! At the time I couldn't stand or walk for more than 10 mins without excruciating pain and I was only barely 60! The pain specialist and physio were amazed he hadn't recognised the state of my back muscles but put it down to them being more interested in bones than muscles...

Hmmm, 'aint that the truth. My orthopaedic specialist coins the phrase "we are but simple beings, all we really know about is bones". This phrase is used to excuse the fact that he knows sweet Fanny Adams about anything else, even though other conditions may well have huge bearing on his 'diagnosis'...

Quite!!!!

However - when I tore a collateral knee ligament the paediatric specialist orthopod I saw in A&E was superb. Maybe he'd not yet forgotten his anatomy and physiology...

Louie, I have been wondering the same thing How long does this PMR last! I was diagnosed in September of2011 and have had numerous flares. I thought I was seein some light but I think not quite yet .

If you had read a bit further up this thread you would have seen my post where I said that 75% of patients get off pred in up to 6 years. I also said I and two other ladies clock up 40 years between us: 15, 13  and 12 years. We are more the exception really but only 25% of patients are off pred in 2 years, about half take about 4 to 6 years and the rest take longer, some even needing pred for life but for some of them it may be because their adrenals don't kick back in or that they were very elderly when the PMR started which also increases the likelihood of adrenal problems.

I did ok for short periods of time (4-6weeks) reducing 1m at a time until I got to 8m....then I did the DSNS method.  Now that I am back up to 9m I feel like I should "start the year of 9m"....why fight it.

Well if you don't have bad side effects....  I think some of us are more sensitive than others.