I really love it when doctors, nurses, friends say "excercise, excercise". They have pains in their backs, hips, legs occasionally and "I go to the gym, a long walk in the forrest and then I feel great" !!! The only time I feel great is in the water - oh, and sitting on the couch, cushioned, legs up and NOT MOVING AN INCH. The most annoying thing of all is - I know they are RIGHT!!
Except they aren't! It is one thing to exercise when you are well, it is another when there is a medical problem, They wouldn't say it to someone with a broken leg would they? In PMR your muscles have become intolerant of acute excercise because they don't get the right oxygen supply. It also takes them much longer to repair after exercise - the reason they are sore not just for a few hours but for a few days.
You can exercise and it IS good for you - but it must be at a far lower level than when you were healthy, at least to start with. I did find that I could build up the amount I could ski over the season but I literally had to go out every other day and just do a bit, a couple of very short runs the first time, have a long rest at some point before doing the third after a week or so. And I could never do one longer instead of 2 short runs until about February! When I had to give up skiing because of other problems, I started walking into the village at first, then we took a slightly longer way round the circular walk. At first I took the lift when we got home, then I did one flight when I felt OK - knowing I could collapse on the bed when I'd got in! It took a long time - but now what was a half hour walk takes half the time.
But no - they are not right. Some experts have noted excess fatigue as a trigger for PMR. I'm less sure it is a trigger - I think that the PMR was there in its early stages and it coincided with doing a walk or climb or something that would have been a very tiring activity normally but because of starting PMR it really knocked them out. I remember doing a wonderful mountain walk one autumn which must have been in the early days of PMR (not identified at that stage) and I was almost unable to move for days afterwards - I was amazed how bad I felt, especially my calves.
I suppose that clears up a few things for me! When I first got diagnosed with Pmr in may I got onto pred I felt great and managed to work but I had that GCA scare in august and I been put onto 60 mg pred now on 35 mg I have been feeling useless as I am feeling tired and fatigued all the time. I was getting rather worried if that is normal. I could not even do a short walk with my dog. I can now walk for about half an hour but after that I am so exhausted. When will this end? Been put on sick leave from my rheumy till mid December . Just don't know what will happen after that 
GCA is a serious illlness - you wouldn't expect to be able to work while you had proper flu or after a serious operation so in that way it isn't any different. GCA is covered by disability legislation so you do have more rights than with "just" PMR which is strange in that PMR is actually more disabling in many ways. The pred often makes people feel very tired too - others it turns into maniacs!
You have done really well to get to the stage of being able to walk for half an hour - have you tried doing 20min in the morning and then another 20 mins in the afternoon? Or stop for a rest somewhere halfway? I liked longer walks that had a cafe somewhere along them and there were some places I wouldn't go for a walk because there wasn't one ;-) Once I got to being able to do half an hour comfortably we would walk the 40 mins to a lovely restaurant near here, have a long leisurely lunch and then walk back - it is all downhill coming back! The first few times I got halfway back and had to stop for a sit down on a bench and then again in the village which is nearly home but I really couldn't have gone a step further without another break!
It does get better as time goes on and the pred dose comes down. But I'm not going to tell you it'll be back to normal in a given time - we are all different and for some people it takes much much longer. On the other hand - one younger lady with really bad GCA at the time was back to work after a few months but was excused night shifts and I think even now doesn't do more than 2 back to back but otherwise she is back to normal work patterns and she was off pred altogether in under 2 years despite having been so ill at first. Having the union and occupational health at work on your side is very helpful to get all you are entitled to.
I found the exercising a problem, when I was on a higher dose I used to walk to the bus stop, travel into the city on the bus, get off one stop early and walk into the mall and just stop and browse (never bought anything!) walk and browse again. I did this for around an hour then sat and had a coffee, back to the bus stop and reversed the process. It's supprising just how far you walk without realising how far you have done.
That was the way I managed with skiing! A short run, rest on the lift (all chairs or gondolas here), short ski again. Or a short ski to somewhere there was a seat on a longer run, short rest, short ski to a hut for a hot chocolate, short ski to the bottom! And all that sun and fresh air!
Shame the season ticket price for older (but not very old) residents has doubled this year :-( My age group is being squeezed every which way if you ask me! Had to wait for my pension - and still only get the lower level, now I am treated as a younger person for prices... Bah!!
Yes I have been to occy health. I am still off till mid December. Once I go back it will be a phased return. Not aloud to do nights and no more than 3 shifts in a row. Also only 6 hours to start with. See how it goes I hope I will managed. Missing work can't wait to go back but I need to be able to last longer than 30 min walking otherwise its looking grim. So I am trying but not to much that I am hurting my progress.
You'll probably find walking improves as you reduce the pred dose - some people find that gives them wobbly legs. Don't rush though - I get the missing work aspect but if you can take it easy.
I find that just walking to have exercise without purpose is worse. Ski lift pass's along with a lot of other things is a problem as there are too many 'older people' around now, and it's a lot of their business and we tend to have spare money. Not directly associated with this thread - I have been concerned about taking AA as I seem to have a rather upset stomach for about 24 hours on the day I take it, it's got to the point of - do I really need it? I take Omeprazole and Calcium+D3.
If you are having gastric problems with bisphosphonates go back to your GP and ask to be considered for one of the alternatives approved for those who can't cope with AA (the cheapest by far). The next in the list are also bisphosphonates but differ in side effects a bit and may be better. Then there is strontium ranelate (I think) and finally denosumab, given by injection every 6 months. Needless to say - the price increases as you progress!
The increase in pass price is as a result of the EU insisting you can't have special rates for locals that aren't available to tourists. However - the new prices mean that the local hill with 116km runs is charging almost the same for the season as the big area pass - for 12 different resorts and 1400km or thereabouts! Know which I would choose - I always did before I became a resident! The local hill has become greedy - they are asking far too much for the season pass in comparison to other places. This summer the area has had a fall in bookings, they are blaming the weather but it is more than that. They have put prices up and/or increased the standards to a point where people are beginning to look for lower-priced alternatives or are only coming for a few days rather than a full week. In winter they don't ski as much - they do cross country or walk or snowshoe. They don't go up the mountain as much - where the huts have also increased prices so many now take a picnic or their own drinks and snacks.
Last year they were expressing concern that they had to get the young interested so family passes/family rooms were made "better value". But they are squeezing all the locals out by making it all more expensive - not only is a day pass 50 euros, but on top of that you are asked to pay to park. The idea is to get people to use the train but that doesn't get you back to the house with skis and boots and paying for that all year probably adds another couple of hundred euros to the annual cost - as well as the coffee up the mountain costing more. It is one thing when it is your one week annual big family holiday - but totally another when you used to go 3 times a week from early December until Easter if the weather was good. And for the last 2 years the weather and/or snow has been not ideal for pleasant skiing! So the bar in the village will profit from us but we won't have as much exercise!
Ah well - I suppose it was good while it lasted and all good things come to an end. Rant over!
Having had a quick look and I found (3 February 2014) pulsetodaydotcodotuk:
Medicines regulators are considering whether the osteoporosis drug strontium ranelate should be withdrawn, after being advised the drug should no longer be prescribed for the condition due to concerns over its cardiovascular safety.
European Medicines Agency (EMA) advisors recently concluded the risks of cardiovascular complications with strontium ranelate outweighed its benefits and recommended the drug should be suspended.
The EMA was due to make a final decision about whether strontium ranelate should now be withdrawn from the market at the end of January, but has put off decision until its committee on medicinal products for human use (CHMP) meets again in February, with the final decision to be announced on 21 February.
The latest news follows months of uncertainty over prescribing strontium ranelate, after concerns over a potential cardiovascular risk first emerged in April last year.
At that time the MHRA advised GPs to restrict use of strontium ranelate to the treatment of severe osteoporosis only and to carry out cardiovascular risk assessments before prescribing it to patients.
But the EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) questioned how far this would reduce users’ cardiovascular risk and the practicality of the restrictions.
Didn't follow the update!
The osteoporosis drug strontium ranelate has been given a last-minute reprieve by Europe’s medicines regulator, following months of speculation as to whether it would be withdrawn from the market.
European Medicines Agency (EMA) experts said strontium ranelate – marketed as Protelos in the UK – should continue to prescribed, albeit only in those patients who cannot use other approved treatments for the condition, and with careful monitoring for cardiovascular risk factors.
The decision comes after the EMA was advised to suspend the drug, owing to evidence it increases the risk of major cardiovascular events, as well as concerns that the restrictions placed on its use last year did not go far enough.
The EMA’s Committee for Medicinal Products for Human Use (CHMP) has now judged strontium ranelate does offer benefits to patients at high risk of fracture, while there is no evidence it increases the risk in people without a history of cardiovascular problems.
Yes - I have seen something about that. Technically you would hope that having a vasculitis might preclude you being given it really! But since they seem to ignore the gastrointestinal risk factors I have little hope...
Thanks for reminding me.
But unless they do a dexascan they cannot say we are "at high risk of fracture" can they? They wanted me to take AA - but my dexascan at the time was normal (near enough) so I declined. But loads of patients are denied scans.
hi eileen, have been on lodotra for 3 months now, but find i have really bad day time hot swets and have gained weight but think a lot of it is fluid as i find I wee about 3 times at night but hardly go at all in the day, about 3 times and since having PMR my apetite has decreased quite a lot and my weight increased, I have reduced lodotra from 15 to 10, hoping it would help, are all these things normal, from Vanessa.
These are all pred side effects - and Lodotra is pred. I have been very lucky in that the Lodotra was far less of a problem than the form of pred I was on before. The primary advantage of Lodotra is that the morning stiffness is far better, that many people need a lower dose to control the symptoms and because they need a lower dose the side effects are also less. Yes, the night time weeing is common - it was never a real problem for me but I know it has been for others. The fluid retention will cause part of the weight gain - try cutting your carb intake, I find that eating carbs always makes me retain fluid, as soon as I go back to my low carb diet it disappears again. It is all experimentation to find what suits you best. If you have been able to reduce from 15mg to 10mg that is good - keep trying 1mg at a time, you may get lower still. For some people things improve at 10mg and below, others need to be down to 5mg, still others don't notice much difference until they are at zero. We are all very different I'm afraid.