Just been away for a few days but suffering now - I think I overdid it and the long train journey-15mg pred Ok but finding I need to lie flat as I have a dull ache in my neck and shoulders.
It is easy to over do it I suppose when you are away from home, out for meals, talking, walking around
I read that PRED can make weight gain. Is this due to the actual PRED or feeling as I do very hungry? Any advice - maybe eat a few small meals a day? I have breakfast but I could eat a big meal a couple of hours later.
Change of lifestyle suddenly within the past 2 weeks since diagnosis is difficult - I want to swim as I did about 5 times a week but no energy - but it would certainly lift my mood! Maybe just a few minutes in the pool and do nothing for the rest of the day,
Thanks
Cassie
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cassie1208
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It can be either or both - some people put on weight, sometimes a lot, due to pred without having eaten any more but obviously if you keep eating because you feel hungry you are likely to put on weight. I put on weight with PMR because I couldn't exercise - nothing to do with pred, I wasn't on it at the time!
I've been on 3 different corticosteroids. With prednisolone the weight I'd put on with PMR redistributed to face and midriff but I didn't gain much. With Medrol I put on large amounts of weight all over and had other nasty side-effects I hadn't had with prednisolone. A switch to a form of prednisone got rid of all those side effects and I've been able, with hard work, to lose almost all the weight. So it depend on the person very much as well as the drug.
Quite a few people have found that cutting carbohydrates a lot helps avoid weight gain and/or lose weight. I eat absolutely nothing processed (i.e. cakes or stuff in a package) and relying on veggies and salad rather than fruit together with normal portions of meat/poultry/fish/cheese has helped me lose 17/18kg. I do find that on the occasions I do treat myself to carbohydrate things, like polenta or non-wheat breads (I have a wheat allergy) or a spelt pizza I get hungry very quickly again. A small portion of steak (say) and salad leaves me full for much longer.
Thank you for your advice which is useful. I will have to make sure I have a good stock of good things in my cupboard or I will be tempted to snack on carbs.
Back to basics if you woud explain something please. When the GP prescribes Pred for PMR - is it a slow release drug throughout the day? Do we use Pred because we need stonger meds than codeine for example?
How come my neck and shoulders still ache a litte(but it is bearable and only in the evenings) and my hips don't ache at all now with Pred?
I am on 15mg since diagnosis 2 weeks ago. I am seeing my GP in 2 weeks but I dont know what to say if she says cut down Pred as I may need 15mg for longer.
No, it isn't a slow release drug and it isn't that pred is a stronger pain killer either. Codeine doesn't work because it has no antiinflammatory action, ibuprofen might in mild cases but that doesn't often work and has dangerous side effects when used long term.
PMR is the name we give to the symptoms caused by an underlying autoimmune disorder. This disorder means that your immune system doesn't recognise your body as self and attacks various tissues by mistake, damaging cells and leading to inflammation. Inflammation causes swelling and that in turn leads to pain. In PMR it is thought that the microcirculation, the very small blood vessels supplying the muscles, are affected and blood flow to the muscles is reduced so they don't get an adequate supply of nutrients and oxygen and the waste products of exercise aren't removed as quickly.
Prednisolone is a very potent antiinflammatory so when we take the entire dose first thing in the morning it reduces the inflammation rapidly as long as we are taking enough. Once the existing inflammation has been "cleared out", the body continues to produce the inflammatory substances every morning, at about 4.30am, so we need a dose that is enough to manage that each day.
We are started on a dose that is enough to manage almost everybody's pain - and studies showed that 15-20mg was enough for the majority of patients to achieve a good result, sometimes in hours but more often in a week or so. This is usually described as a moderate dose. Above 20mg is high, below about 8mg is low. Having cleared out the existing problems, the idea is then to reduce to find the lowest dose that achieves the same result as you managed with the starting dose - enough to clear out each day's new inflammation without allowing it to build up again and cause a flare and the symptoms come back. By reducing in small steps, never more than 10% of the current dose, you should experience less discomfort and identify the right dose more accurately. The body gets used to its daily "fix" of pred quite quickly so you may suffer discomfort that is very like PMR but which is due to the lower dose - again, the smaller the reduction the less the discomfort should be.
The anti-inflammatory effect of pred lasts for 12-36 hours depending on the person. If you are an "18 hour" person then you will start to feel it a bit later in the day - plus I bet you are still doing housework and things? Your muscles remain intolerant of exercise - you still need to manage that for yourself to help the pred and that means pacing and resting appropriately. So you are probably using your arms and shoulders more - or you could have had more inflammation in the shoulder joints and muscles that is taking longer to clear out. PMR can also cause tendonitis/synovitis and they take longer to fade than the muscle inflammation simply because their blood supply is not so good.
Does that answer your questions? Ask if I've missed something out or it isn't clear.
Thank you for explaining that fully and clearly - it has helped and I will read it again so that I fully understand it. It's just the neck pain that returns about 8am but lessons during the day.
Why is PMR likely to affect muscles in hip, neck, shoulders and not other areas or can it be every muscle in the body?
It can be all over if you leave it long enough! They are just the typical places to notice it first I think. Into the bargain your back muscles do a sterling job of keeping you upright despite the fact your spine wasn't really designed for walking upright! With PMR you do tend to hobble and not walk properly and that puts even more strain on them. Myofascial pain syndrome is also common alongside PMR and causes knots of muscle fibres in the shoulders, mid-back and low back. They can irritate nerves and lead to referred pain, and your body adopts poor posture to try to minimise that pain. Eventually your back gives up the unequal struggle and muscles go into spasm which can be really painful. Higher dose pred will ease it to some extent - but these are things that often are better dealt with in a more targeted way with cortisone injections or massage/manual mobilisation of the trigger points which often means you then are able to manage the PMR itself with a lower oral dose. Some people find massage or Bowen therapy helps.
I think Pred makes you feel hungrier, so it's very difficult not to overindulge. If you feel hungry between meals, try having a drink, that sometimes helps - not fizzy, sugar laden drinks though. Also try drinking water about half an hour before meals, that takes the edge off your appetite, rather than with the meal.
Can you try a gentle swim once or twice a week on a day when you aren't doing anything else. You have to learn to pace yourself, so don't expect to do everything you did before, but you can still do things in moderation.
When I first started taking pred I was ravenous, I could have eaten a five course meal followed by another five course meal plus a side dish! I gave up gluten and simple carbs which definitely helped I think. I do occassionally slip I must admit, but it is then more of a treat.
I go swimming regularly, some days I really feel too tired, but find that pushing myself to go really pays off and I come back home feeling much better and can then collapse into a chair. I also chat to people at the swimming pool which also boosts me up.
So its not just me who gets really hungry! I went for a half hour swim today and as you say I feel better for it but are tired now and relaxing. It wasn't the same when I first got in as before as I didnt have energy to swim up and down but I just relaxed and enjoyed just being in the water.
My neck and shouders ache tonight but are relieved by lying flat. I have decided no to try to swim on 2 consequtive days and 3 times a week if I can.
That is wonderful news. I swim just twice a week but would like to swim three times, I think that is probably a maximum with PMR. I found it took me a while to build up my energy to my pre PMR level, but as I enjoy swimming anyway I did not think it matters too much. I find I can be quite stiff afterwards, which does surprise me as I would have thought I would be OK after a few months, but perhaps it is the PMR.
Thanks - for the past 2 years I have been swimmimg 5 times a week - then last April I started to lose energy and was diagnosed with a frozen shoulder - then pains in hip- I had to cancel a holiday as I was so weak and tired. From views on this site, I may have had th early symptons of PMR and not a frozen shouder but the PMR was never mentioned. At least I know what it is now and the sudden loss of energy and pains. Swimming is important to me and as you say it is good to carry on - I find I am more mobile in the water now I am on Pred and my shoulder is more flexible.
I will carry on swimming at least twice a week but I feel half an hour is the max as I dont want to suffer afterwards.
I work part time and I know I coud not go swimming on the days I work as I would be too tired, so I will make an occasion of it on my days off.
I kept (and still do) a cucumber in the fridge, wrapped in foil, when I felt hungry I cut an inch off it and ate it. Hunger vanished. You will be surprised to learn that a cucumber has many essential minerals.
I also found that when I felt hungry, I just drank a glass of water - did not feel hungry any longer.
There are two books available:
1) "Living with PMR&GCA", written by patients for patients - no jargon
2) Kate Gilbert, Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide.
Wow thanks for the advice and books available- I will try the cucumber! It's tips like that which are so useful and simple but I hadnt heard of that. Might help to keep weight off too and easy to take with me when out.
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