My chiro says many of his patients with PMR have it burn out between 5 and 7 years!

Diana and Tavidu it's nice to hear stories of people you actually know and their experiences with going into remission with PMR  One can see of course this doesn't come so readily for others!  I have been at 7 to 7.5  mg of cortisone for the last month and at 7 the last week and I see my legs getting weaker and heavier every day and it appears I need to slowly start increasing my dose to see if I can that leg strength back.  No, getting off this steroid is not proving easy for me after 3 years as I've had 4 or 5 failed attempts!

Yes, you 'chose' to have a very active recovery.  For most of us there is no choice, we can go only so far as we can go.  I find your lists of exercise with PMR and steroids fairly well unbelievable when applied to myself.  And I was no couch potato beforehand.

It is generally believed that men have a different, easier time of it both with the condition and with the steroids.  Have often wondered if this was hormone related.

Agreed - Nick's exercise regime could make some people feel inadequate! We have to remember that we are all different and that while he is able to 'chose to have very active recovery' others, who may have been very active prior to PMR are now not able to even walk, let alone ride a bike. They certainly didn't 'choose' to have an 'inactive' recovery. How 'lucky' for him that he can do these things. I for one, don't find it terribly encouraging.

It saddens me to see responses like this. Just so you understand better where I come from, I will describe my PMR beginnings...

Before being diagnosed with PMR last November, I could not even go to the bathroom on my own. I could not get out of bed by myself. I had a whistle hanging around my neck, to call for help if someone  from the family was not near by. 

When I was put on pred  last December, it took whole week before  pain and inflammation was under control.

While laying in bed, I asked myself if this is the life I want to live ? The answer was resounding NO.  I was determine to find the way to overcome weakness brought upon me with PMR.  I  read everything I could find on PMR, recovery. I was seeing rheumatologist every week, and use the chance to ask lots of questions. It became clear to me  that PMR muscle recovery is similar to recovery from endurance training.  I knew that there are 2 ways to recover, either resting or performing active recovery with very specific, low intensity activity. I knew that muscle recover much faster with active recovery.  That was the justification and logic for my choice.

My first goal was to make my legs stronger. My first walks were just few hundred yards, very slow and followed with stretching. The key to recover, and this is very important point, is how long  were you inactive. Muscle loss in a first 2-3 weeks is negligent, but it accelerate after that time.  My "down" period was very short and thus recovery was much easier to achieve.  

To make long story short, combination of relatively quick diagnosis, short inactivity period, previous extensive knowledge of training for triathlons helped me to  carefully design active recovery. 

You may call this "lucky" but I beg to differ.

I do call it lucky. I am 52 and was doing triathlons prior to PMR so I too know all about training, and I'm hardly old. This was all wiped out with PMR - I have no hope of being able to do any sort of training in the near - or not so near - future. To read your posts (and not just this one)spouting that exercise and getting off our butts will make things better only makes me feel angry and sad. I am truly happy that YOU are able to do these things, but so many of us can't and you make it sound like we just aren't trying hard enough.

Enough of this. I am of very short temper and very quick to snap atm - I don't know if it's the drugs or what, but I'm sorry that we can't agree.

You should keep posting your miraculous exercise program, I'll just ignore them, as I should have done this one.

Agreed, Flip.  It took me more than 2 years to get a diagnosis with my symptoms worsening all the time, and when finally told what I had and given steroids, it seemed like a miracle. 

BUT - a big but - in that time I had tried many remedies, both natural and crazy, nothing helped.  My muscle tone was non-existent and I could barely walk.  The miracle happened, but it was a two-sided coin.  I could walk and move and carry on a 'normal' life, but only as long as the fatigue allowed me to. 

It doesn't appear to me, Nick, that you had this particular problem.  Fatigue which hits you with a brick and drains the life out of you.  It happens any time, any place, any where. Like pulling a plug, removing a light bulb or the batteries.  And all through this I had a home to care for and I was working full time.  My husband did his best to help me, but didn't really understand - who could, unless it was another person with PMR?

I managed, with the help of all my colleagues (they were brilliant) to work full time for 8 years.  That, and coping with all the rest, took every scrap of energy I had.  No room for gyms and fancy equipment, and road trials or whatever.  My pre-PMR 'normal' was gone forever and this 15 year journey took me to where I am now.  A new normal which I am content with as it could have been so much worse.

Nick, do carry on with your exercises, road running and suchlike.  But don't patronise the rest of us for which your 'cure' is pie in the sky.

Nick, I'm no athlete.  But I've always been active; especially in middle age I started to walk a lot.  I had a job which required some physical activity (have you any idea how heavy books can be, and the bending and stretching involved? ??  I was able to run a bit (5 k, not much, but I enjoyed it).  During my undiagnosed year I did everything I could think of to "improve" my physical wellbeing.  I even tried to follow a protocol prescribed by one of those television gurus on US public tv, on aging backwards.  The day after I tried her exercises I was in total agony.  I kept thinking, if I could just do that much more, manage that new exercise, I would get better.  I went back through my physio files and started doing exercises which had been miraculous for me in the past.  The day I went to the clinic and, at the time without a family doctor, had a meltdown at the duty doctor's counter, the visit had been triggered by two things: a precipitous weight loss, and a growing inability to manage even the easiest of my exercises.

After pred worked its magic I started to do everything.  I mowed the lawn (we do not have a power mower) went for long walks in fear of developing osteoporosis, my husband said I was like the energizer bunny!  It was only after about two months that I understood I was not cured, the pred was only holding my symptoms in check, and if I was to expect a full recovery I was going to have to pace myself a lot better.  I can't run any more because of back problems, but I continue to walk.  For a while I took several smaller walks a day instead of the lone long one.  Now I can do about half of my daily steps in one walk, about an hour, and I've proclaimed to the menfolk in my family that I no longer mow lawns (back problems).  I use Nordic poles a few days of the week.  I do a little tai chi every day, and also carry on with the physio and yoga.  I am as active as I possibly can be and I know this is well beyond the reach of many PMR patients.  I also balance all that moving around with long periods of rest (which is why I'm undoubtedly on this site far too much these days).

Now, I'm doing a similar thing on the healthunlocked forum, where I've been describing my experience with alternative treatments - can't do it here because of the moderation.  I know that most people don't even have access to what I do, but I thought it was worth documenting the journey because it is so very important that we find safe ways to manage this disease, if not cure it, because prednisone really is a dangerous substance.  I think your documentation of your experience is important.  It may be of more use to males than females, as many have said we seem to react differently to the prednisone, but it's still an important record.  Just don't expect very many of us to be able to do anything approaching what you can do. 

Thank you.  Cheers.

I must be doing something wrong in trying to communicate what I feel is important as far as exercise and PMR.  What I do, the level of activity is really irrelevant. I post it so people can understand that it is possible... What is far more important, and in my opinion, applicable to everyone, is that low intensity, more often activity is beneficial for us to feel better, less stiff and probably recover faster. What is also important, is that low level activity, with HR at specific level ( ~100-115bpm) done longer then 30-40 minutes will grow NEW capillaries and thus improve blood supply to muscles.