Morning all. I wrote my first post on this forum 4 months ago (healthunlocked.com/pmrgcauk... and now, 9 months after my first symptoms I have got a diagnosis of PMR - well ATYPICAL PMR to be precise! I think the atypical bit refers to the fact that at 53 I am younger than the norm for PMR. I've been on and off pred for the last few months while they have been trying to decide whether or not I have PMR. Needless to say, that did me no favours in terms of symptoms. Now I am on a proper regimented dose of pred, starting at 15mg.
I have a couple of questions regarding the pred. I get the impression that it doesn't last a full 24 hours because I take it at about 6.30am and I feel a lot better by about 10am and then by late evening I start feeling worse again. Does that mean I should be on a higher dose of pred so that I get the benefits all day?
My second question relates to exercise. I used to do a lot of exercise before PMR - I played squash twice a week and swam hard 3 times a week amongst other things. I am also a gardener which is fairly physical. Needless to say, all exercise has gone out of the window since PMR. However, now that I am on the pred and feeling better in the afternoons, I do feel like I could get back into the exercise. But will this do more harm than good? I have found my loss of fitness to be one of the most depressing aspects of PMR because it was previously quite a big part of my life.
I have loads of other questions but I'd better not use them all at once!
Thank you for reading this.
Written by
Jontie
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There are a lot more experienced people on this site than yours truly, however,my guess is your dosage is not high enough to control the inflammation, it should be sufficient to virtually cover the 24 hours.
Regarding exercise, I to was very active , gym 3 times a week, swimming and walking.I could still carry on doing it after my PMR diagnosis but you just have to be really conscious not to over do it. I had my first bad experience a couple of weeks ago where I was really pushed at the gym doing leg extensions with weights - I paid the price for the next 5 days which has set me back, thinking of just walking rather than the gym now. Good luck, take a measured approach. John
Some people derive benefit from a split dose when this happens ( you know,) save 5 mgs for the evening).
The exercise regimes that tend to keep us supple whilst recovering tend to be aqua aerobics, gentle swimming, increasing distance walks on the flat, Pilates, gentle Yoga. This will keep you fit enough to re- start a more demanding regime as you get better. Sheer enthusiasm can make us do too much, the consequences are as if you've run a marathon whilst carrying weights and it can last for days.
You might be right that all the messing about with Pred means that you may need say 20 mgs until the inflammation settles. That was my start dose, I am now on 7 mgs a year later and did two lots of 13,000 steps last week amongst my usual 6.500 and got away with it. My step counter keeps me at it.😉
SJ had answered really. You may be one of those people who doesn't get the full benefit of the Pred dose you're on, so maybe splitting it - 2/3rd morning, 1/3rd evening may help. However, that may mean you don't feel as good all day - so a bit if experimenting may help! We all have to find the best way for us.
Exercise is good, both mentally and physically, but you must remember that your muscles do not repair as well as pre PMR/ pre Pred, so no repetitive type exercise like circuit training etc, nor hard swimming! A bit gentler is what's called for, many try pilates, yoga, tai chi etc. Give your muscles time to recover as well, so short swims, walks, stints in the garden are fine. Would probably give the squash a miss for a while, you will get back to it, but remember - gently for the time being.
BTW there's no quota on questions! Ask as many and as often as you like.
Even the international guidelines say "over 50" so you are hardly atypical there! I wonder when it will sink in that they have more than half their patients being described as atypical for various reasons - so maybe, it is typical, just different?
It isn't entirely a case of just taking a higher dose to get through the 24 hours. The antiinflammatory effect of pred lasts from 12-36 hours depending on the person. If you are at the 12 hour end then you will get a return of symptoms by evening. Then a split dose may help - about 2/3 in the morning, as early as possible, and the rest later in the day - not too late, about a couple of hours before the symptoms would be expected to reappear. It may be at the moment that you need 20mg though - the international guidelines say the lowest effective dose in the range 12.5 to 25mg. And you have to do your part in managing things - by pacing and resting appropriately. If I overdo it I will have a horrible evening - whatever dose I'm on!
Exercise is good - but again, you have to rest and pace and keep within your limits for the moment. The pred manages the inflammation - but the underlying autoimmune cause of the symptoms we call PMR is still active, attacking your muscles and making them intolerant of acute exercise, just like Lemsip makes some of the symptoms of your bad cold less trying but the illness is still there in the background. You will manage to exercise again but you will have to train - and you can't train as you used to do because for one thing your muscles can't tell you you are overdoing it and for another they won't heal again as quickly as they used to. DOMS (delayed onset muscle soreness) takes longer to set in, will be disproportional and take far longer to fade than you expect. One day exercise at a low level, one day rest - and you can build up the amount of exercise slowly. But that means starting as if you had never exercised and increasing the amount by a few MINUTES at a time - will rests in between. You will get there, most people reckon somewhere between 50 and 70% of their previous exercise load for some considerable time. But it takes time.
I really appreciate you all taking the time to reply. And such informative replies as well! I can see I'm going to have to take things slowly and maybe I'll experiment with splitting the dose. Thank you. I think this forum is invaluable. It helps to learn from folk who have been through the same thing.
Hello Jontie, sorry to hear you have had such a difficult route to diagnosis and proper treatment - I'm sure it won't have helped matters! Hopefully you'll soon be able to settle into a routine that manages the inflammation so that you can begin to enjoy life a bit more.
I know it's a poor substitute, when you've been used to a sporty life, but I would strongly advocate walking - starting with short walks and building up gradually. One of the things I've had to battle with (in common with many fellow-sufferers) is the fatigue that seems to come in two forms - one a feeling of being sleepy/wiped out after any activity, and the other the "deathly" variety, when all of a sudden I feel as if I'm going to fall to the floor if I don't sit down quick. Walking is a relatively gentle way of toning muscles (and if you use nordic walking sticks you also exercise arms and upper body) - and perhaps even more importantly it helps guard against the bone thinning that can be brought on/exacerbated by use of steroids. I use a step counter, and aim to do over 10,000 steps at least a couple of times a week, and aim for over 6,000 on the others. Having a dog that likes walks helps!
The other thing I'd recommend is tai chi. It's gentle but also challenging and stimulates both body and mind. I always feel tired afterwards, but it's a pleasant tiredness and I usually settle down for a bit of a refreshing nap. Not something I'd ever have done before (daytime naps I mean), but pmr is truly life-changing in so many ways!
As you probably know, pacing is everything with this illness - your body will soon tell you if you've done too much - and I've found that it's helpful to have a plan to start small with the aim of building. From the experiences of others on this forum, it seems that more active sports/hobbies can be enjoyed again when the inflammation abates and muscles are strengthened - just don't try to rush it, it's not a battle we are likely to win!
You've had some good advice here, especially with regard to learning to slow down one's pace, and get exercise but make sure it's gentle. It's possible that the being on and off pred for the past few months while they mucked around with diagnosis has really messed things up for you, so my advice would be to take a very long time before trying to taper. Hopefully the 15 will be enough, dose splitting or not, but you may feel you should stay at that level a bit longer than the usual few weeks. Once your body is really accustomed to your initial dose and you are feeling as well as you are likely to, with good blood results, then the taper should be very slow and smooth, attempting to trick the body into not noticing! You may take many months to get to the lowest dose which still manages your symptoms. I appear to have stalled at about 1.5 mg, which I'm happy with although my doctor seems to think I should just be able to stop now! But it took me about two years to get here, and for most people achieving the lowest dose will take no less time than that, and maybe more. And eventually we all want to wean off altogether but we can't do that until PMR is in remission. All the best!
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