Polly P Off

[192638]

I am 72 and new to HealthUnlocked . I was diagnosed with PMR 18 months ago though I know I had it long before then as I've been very active all my life playing lots of sport and blamed overdoing it and stress for the pain I was getting and felt like a winging old girl (which I guess I was and still am). I'm trying very hard to get off the pred. and probably drop the dosage quicker than I should so keep getting relapses and have to up the dosage again. I am down to 4mg. daily but began on 25ml. I was a mistakenly prescribed 25mls as I was only supposed to be on 15ml. I still don't know whose mistake this was, the chemist or my Rheumatologist as when I went back for my second visit after a month he asked me why I was on 25mgs. I told him that what was on the script. He couldn't believe it as it was only 15mls on his computer. Of course I had immediate pain free results which was marvellous but of course proved harder to reduce as I'd been taking it for a month. I still have pain though I put up with it as I think a lot of it is to do with Osteoarthritis, it's hard to tell. I get dreadfully depressed when I'm useless and can't do some of the things I used to like play golf (still try) or sit at a computer or in a car for more than 20 minutes till the pain takes over. I push myself to exercise, walk and I've started to swim so hopefully it will all help but I wonder if all the things I used to do gave me the problem in the first place and will all the exercise just prolong the pain? My Dr. has started me on Methotrexate replace the pred. eventually. Is this just asking for more problems?

[HeronNS]

I know others will have plenty to say on the subject of mtx.

My feeling is that you are maybe not recognising that the pred doesn't cure anything. It is only damping down the symptoms so you can lead a reasonably normal life. You have to treat yourself gently as your muscles remain intolerant of strenuous exercise and will until the disease begins to go into remission. Not to say you can't exercise and do all those healthy things, but maybe be a lot more gentle with yourself? It also sounds like 4 mg is not quite enough to manage the PMR pain at the moment. I find there is a difference between OA and PMR, and PMR is much more likely to inhibit comfortable range of motion. I feel it in the muscles, not the joints. For a long time I thought my PMR was only OA and couldn't figure out why I felt the pain in my muscles and not my joints.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you are having problems.

As you were only diagnosed 18months ago, it's very likely that the PMR is still quite active (it can last much, much longer than that, despite what Rheumies tell you) so I would say that at this stage 4mg is not enough. The fact that you have had a few flares along the way would indicate that you haven't really kept the inflammation fully under control since the original dose - which obviously did. It was unfortunate that you were started at a higher dose than necessary, but you should still have been able to reduce without too many problems.

At higher doses the pain of OA would have been masked by the Pred (know that from personal experience) but as you get lower it returns with avengence, but you should be able to differentiate between that pain and that caused by PMR. I found it much more localised and specific to the particular joints affected. PMR pain is more likely to be around the main muscle areas, shoulders, hips, maybe knees but bilaterally , which AO isn't always, usually one side is worse that the other.

Exercise is good, but not if you push yourself too much, it needs to be gentle - walking and swimming are good, as are Pilates, Yoga, Tai Chi - but you're not training for the Olympics - gentle and rest afterwards. Your muscles, both through PMR and Pred need to be looked after, not taken for granted. They don't recover from use as they did pre PMR.

Can't comment on MTX, but would have thought you, and Rheumy haven't really given the Pred the chance to work correctly. Sure users will come along with their advice.

You aren't useless - you just have to learn to live life differently - pace yourself, take exercise, but plenty of rest.

Take care.

[PMRpro Ambassador]

25mg is nowadays the top of the recommended range as starting dose - it doesn't really make it any more difficult to get off it as you start with a dose that should be too much anf then taper to find the lowest dose that gives the same result as the starting dose. Until you get close to that dose reducing shouldn't be too much of a problem unless you try to go in big steps when you are likely to suffer steroid withdrawal discomfort. When your doctor realised he'd made a mistake (sorry, he can't blame the computer) he could have dropped your dose to 15mg very quickly had he wished, it isn't much of a problem at that level after just a few weeks.

However - as the others have said, if you have PMR and if you want to remain reasonably pain-free you need the dose of pred you need. Every morning the body sheds a new dose of inflammatory substances which you then take enough pred to combat. You need just enough, too much is a waste, too little has no virtue as you won't combat all the inflammation and slowly it will build up again until you have a proper flare and need a higher dose again to get rid of it and you will have to reduce again.

You are not having relapses - the underlying disorder is still there and causing inflammation by causing your immune system to attack body tissues in error. That's what causes the inflammation and hence the pain and stiffness. You are taking too little pred to deal with it. The pred cures nothing, it manages the symptoms to allow a decent quality of life until the actual cause burns out and goes into remission. That is likely to be anything from 2 to 6 years for 75% of us - a few are OK in less but they are more likely to have a relapse subsequently and a quarter of us have the disease for even longer.

Your muscles are intolerant of acute exercise because of the damage being done by the autoimmune disorder - you have a new normal to adjust to now. You can still do exercise but you have to learn your limits and stick to them. You can build up the amount you do but it has to be slowly. Pushing yourself is just causing the pain because your poor muscles can't manage what you are asking. You are developing delayed onset muscle soreness - and it is taking far longer to recover than was usual. Pacing and resting appropriately is essential to avoid both that and the fatigue associated with autoimmune disease.

If you have PMR then methotrexate will not replace the pred. Pred is the only thing that manages the inflammation in PMR. If MTX worked - they would use it not pred and the recommendations for management of PMR would include a strong recommendation. They don't. MTX may allow you to manage with a lower dose of pred because it can change the way the body metabolises pred - it does for some - but that is not guaranteed and I would say the majority of people I have come across didn't find it helped and for many the side effects won. Personally I think that it is probably worth trying but there are no guarantees - and if it causes side effects than it is NOT worth it.

It is in Recommendation 7 here:

rheumatology.org/Portals/0/...

Like the others - I think you need a slightly higher dose of pred (MTX or not) and to reassess your exercise level.

[Patience_1]

Hello Polly, I really think there's no way forward but to listen to what your body is telling you at each stage. It's so hard to let go of life as it used to be, and hard to accept that some days the slightest effort can knock us out.

Like you, I went for many months before being diagnosed - because I was attributing the pain to a knock-on effect from an earlier knee injury that in effect put a strain on other parts of my body, particularly arms and shoulders. After diagnosis I was much relieved to have the pain almost completely lifted by the prednisolone, but I was also anxious about getting off the drug as soon as possible because of the potential side effects. I've come to realise that I'm not in control of this, and the inflammation will go when it's ready and not before. I can't speed it up, but I might delay it by pushing too hard to reduce the pred, and cause flares which then make management of the pain more difficult.

Overdoing things - whether it's days out with the family, housework, or physical exercise - risks paying a heavy price the following day, and I certainly struggle to get the balance right. Sometimes I've gone beyond what I should have done before fully realising I'm tired and need to stop. It's all about balance and pacing things, isn't it?

Above all, please be kind to yourself - it's not being silly or useless to have to find different ways of doing things - it's something we're forced into by this illness. I used to love walking a lot but now find I haven't the stamina for longer distances. Instead I'm taking up tai chi, and am hopeful this will be a gentle, forgiving way of strengthening my body and improving my balance. It's not something I thought I would ever get into, but hey ho, we have to do what we can. I do hope you soon get your meds sorted and feel better in yourself.