Tray

[pmrdec112014]

Hi. Just wondering whether what I am experiencing at present is normal? I have been on 15 mg pred for 7 weeks exactly now. Am due to see my Gp on Tuesday . I have been back to work for 2 weeks on a phased return but am noticing that in the late afternoon, evening time when I am tired I am getting serious shoulder and or arm ache bordering on painful at times though probably not as bad as when diagnosed. Thanks in advance.

[Celtic PMRGCAuk volunteer]

If you are overdoing things now you are back at work, that could be aggravating your muscles. It's very early days into your treatment, and it's important to remember that the steroids aren't curing anything, they are just damping down the inflammation that causes the symptoms. You still need plenty of rest to allow those steroids every opportunity to do their job - the more you do at this stage, the higher the dose you will need, possibly for longer.

[Patricia157 in reply to Celtic]

I too have been on 15 mg of Pred but only started on them on 2 January. I saw my doctor on 20 January and he wanted me to reduce to 10 mg. I asked whether I could perhaps take them down at a slower rate bearing in mind the useful comments on this forum.

He agreed and so I am, for this two week period, I am on 12.5 mg. I will be reducing to 10 mg next week. The first day at the lower level brought back slight pain but not nearly the levels I had before I started on the Pred. I took paracetamol which helped.

I don't know whether the pain restarted slightly because of the reduction or because it was due to me doing too much, due to my husband being in hospital and then his recovery at home, which meant I had more running around.

I hope I will be able to get more rest time next week as things are now getting back to normal now. Rest seems to be the answer as Celtic has advised.

Good luck

[pmrdec112014 in reply to Patricia157]

I hope you manage on 12.5mgs as I have already tried a reduction from 15 to 12.5mgs after 4 wks at 15 but only managed 3 days before the symptoms came back with a vengeance so had to step back up. I am definately only agreeing to a 10 per cent drop from now on and am going to do the dead slow reduction too. Unfortunately as I am only 51 I have still got to work but I may have to review hours if this thing carries on for too long as the pain sometimes is really nagging.

How was your illness diagnosed? Mine hit me like a bus really following surgery although in retrospect I had underlying symptoms for a few weeks prior. Best wishes with your journey anyway.

[Patricia157 in reply to pmrdec112014]

I started feeling pain in one arm above the elbow last February. I thought I had pulled a muscle.

Then in the autumn it transferred across the back reaching the other arm as well. By November I was in great difficulties.

My doctor suggested chiropractic treatment but this made no difference.

Dressing, moving, sleeping and getting out of bed were the problems I had.

A neighbour who is a retired nursing sister suggested I might have what she had had some years earlier and so I made an appointment with my doctor. He said it was unlikely but would have a blood test done.

This proved positive, I had PMR, and I am very grateful to my neighbour for her suggestion as the symptoms mimic or mask other things.

Whether the PMR appeared following moving house in the autumn of 2013 I don't know. We were downsizing from a four bedroomed house into a lovely two bedroomed apartment in an retirement village.

It would appear that I seem to get the more unusual health problems now and then and have had difficulty in getting them diagnosed. This is just the latest! I also have a more unusual blood group. ABPositive. It makes me wonder sometimes?

But everyone is different.

Good luck with managing it, but this forum is a great help.

[Celtic PMRGCAuk volunteer in reply to Patricia157]

Patricia, your Dr is suggesting that you reduce at much too fast a rate. Just over 2 weeks on the starting dose is unlikely to get complete control of the inflammation. I would think you've certainly had a very lucky escape in not following his advice to reduce straight to 10mg, and you certainly should not be reducing to 10mg in two weeks time either.

No doubt the pain restarted due to the fast reduction, and the stress and worry over your hubby won't have helped.

If the increasing pain subsides on the 12.5mg, it would be wise for you to remain there for at least four weeks before attempting another reduction, especially in view of the small amount of time you spent at 15mg. If you don't get control at this stage you risk returning to 15mg and then once into a yo-yo situation many people can find it more difficult to reduce.

It is far better to reduce in small decrements - in that way it is much easier to detect at which new dose the inflammation is building and you can quickly return to the previous dose.

Good luck, and I hope hubby is recovering well.

[Patricia157 in reply to Celtic]

Thank you for your advice. I will see how things are next week before I even contemplate reducing again. My doctor was taking the advice from a manual, not from his head! This is why I asked him if I could reduce more slowly.

Many thanks

[PMRpro Ambassador in reply to Patricia157]

There's nothing unusual about PMR - it is the most common inflammatory arthritis in over 60s!

If he's "using a manual" he needs to find a more up to date one! 15mg for 6 weeks, 12.5mg for 6 weeks is far more suitable and recommended by a top group, then they keep the patient at 10mg for a year. Many of us think even 2.5mg at a time is too much for many patients and at the very least a week or two of alternating one day 15 and one day 12.5 on the way down makes it easier. It has been recommended for years that a reduction shouldn't be more than 10% of the current dose, so using 1mg right from the start is not a bad idea. It is all very well rushing at things but often more haste means less speed.

[pmrdec112014 in reply to Celtic]

Thankyou for your advice. Luckily I only work four days and am off today so will be resting as much as and over the week end. I may have to review my hours if this thing is going to continue for a while.

[PMRpro Ambassador in reply to pmrdec112014]

At a conservative estimate PMR often lasts 2 years - but the literature (and experience) suggests about a quarter of patients are off pred in 2 years or less but are at a higher risk of relapse later, half take up to 4 to 6 years. The rest - even longer.

So yes - this is going to continue for a while I'm afraid.

[pmrdec112014 in reply to PMRpro]

Oh that's not good then. Its miserable to say that I have many feelings of late of not being able to cope with it all but am trying to remind myself I could have some thing worse!

[PMRpro Ambassador in reply to pmrdec112014]

I'm sorry - really, not just saying that. I know where you are - I'm 10 years ahead of you and still on pred. HOWEVER - I am well and able to most things I want to. There are some things I've given up (especially housework ) But I'm 10 years older than when it all started.

The first year is probably the worst of any chronic illness, and as you say there are a lot of things that are far worse than PMR. A pain in the rear it may be but it doesn't kill and with care and inventiveness you can live fairly well with it. If you have a good GP and/or consultant it helps - so if you don't have at least a sensible GP, seek one out. If your specialist is a prat - consider looking for a better one.

Above all, don't read novels before bed or when resting: go on an education odyssey. Knowledge is power, and when YOU know about your illness, people won't be able to pull the wool over your eyes. There are 3 forums in the UK, each with slightly different characteristics and providing info in various ways. There are also other places to get reliable info:

The website for PMR-GCA NE can be found at pmr-gca-northeast.org.uk

The forums within the NE site are here - pmrandgca.forumup.co.uk

Other useful sites:

PMR-GCA Scotland pmrandgca.org.uk

There is also a new National Organisation PMR GCAuk which covers England, Wales & Northern Ireland - now has a website pmrgcauk.com.

PMRGCAuk have a web-based community/forum on pmrgcauk.healthunlocked.com

rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

Knowing what it is you are dealing with makes dealing with it more straightforward. You need to know what you can do, can't do, should do.

Your shoulder pain may be bursitis due to the PMR (a common feature) which is almost covered by the pred but not when you are working or towards the end of the day. A local cortisone shot into the shoulder might be a better answer. If you are working then you may need a slightly higher dose to manage well if the injection doesn't help. That must be considered in terms of the side-effects you are experiencing from the pred. The received wisdom is that lower doses means fewer side effects - you have to find a balance.

Consider alternative therapies that may provide some relief. A lot of us have gained great benefit from Bowen therapy - if it is going to help you will know quite quickly, within 3 sessions usually. I managed relatively mild PMR with no pred for 5 years by doing aqua aerobics every morning which got me moving. The steam room and sauna also helped a lot. I did Pilates and Iyengha yoga. I was self-employed, I chose when I worked! I personally got/get a lot of help from sports massage but I have used it for years and am used to sometimes feeling worse before feeling better - it can release pockets of cytokines into the circulation, the same cytokines that are the cause of the morning stiffness, and you can feel quite rubbish for a while!

Several people have said they have benefited from Nordic walking - the actions involved probably improve the circulation to the affected muscles and that becomes a cumulative effect. If you can get moving, even a bit, and then do it regularly, you will find what you can do will increase and your balance, flexibility and strength will all improve too. It is getting the motivation to do it that is difficult - once you feel the benefit that motivation is easier to find.

It WILL improve - promise!

[pmrdec112014]

Your reply has been an amazing inspiration so thank you PMR pro volunteer. I will investigate all the options as I am definately not one to wallow and a great believer in self help. I am so grateful for this forum let alone any others available. I do not feel so alone x