I was diagnosed with PMR at age 55, days after completing an Ironman race. I was on antibiotics for a bad sinus infection during the race. Not sure if PMR was triggered by combination sinus infection, antibiotics and athletic stress of several hours competing in the Ironman. My arm and leg joints were incredibly sore for a couple of weeks after Ironman making it difficult to work at my job. My family physician sent me to rheumatologist who put me on prednisone - 20 mg/day ~ 1 week, 10 mg/day ~ 2 weeks then slowly reducing to 3 mg/day over course of 1 1/2 years. I brought myself down to 1 1/2 mg/day a couple of years ago. I don’t know anyone who has been successfully taken off prednisone with PMR that hasn’t eventually had a flare up. Since PMR diagnosis, I ran a 50K trail run PR, ran/walked 11 marathons in 11days in 11 states, and completed 50 marathons in 50 states. I stopped doing Ironman’s and triathlons so I could focus athletic effort on completing marathons in 50 states goal. I’m 62 now. Within the past year, my eyes are feeling dry and I’ve developed plantar fasciitis in both feet which I keep under control with stretches/feet exercises. I’m not sure if these additional ailments are caused by PMR or just getting older. My advise to those athletes with PMR is to get sufficient sleep nightly, eat a healthy diet (limit dairy and red meat) with lots of Whole Foods, and continue to exercise.
Endurance Athlete w PMR: I was diagnosed with PMR... - PMRGCAuk
Endurance Athlete w PMR
Hello and welcome. I can hear jaws dropping around the globe as people read your post; even a 100th of your achievements is the stuff of fairly land dreams for 99% of us old and not so old. It is very difficult to know how to comment on your current maladies because you are well out of the statistical norm. Getting older is certainly something we forget about as we are focussed on our condition and Pred etc. the years tick by and we wonder why we have a dicky hip or something. We panic about PMR and the realise 8 years has gone by. Wear and tear has a lot to answer for. Autoimmune activity may also be in the mix or it may be new allergies or something completely different. I’d say most people here are converts to the sleep, diet and healthy lifestyle but for some, even previous athletes and the very fit (I was one at 55) their bodies have different ideas. Some people never look back after their PMR goes into remission, start to think that’s it and later on it reappears. Life doesn’t always help. The same goes for Pred. Sorry it’s very vague, perhaps someone else can be less so!
. I don’t know anyone who has been successfully taken off prednisone with PMR that hasn’t eventually had a flare up.
Oh I’m sure there are plenty…but only if their PMR has run its course. The flare ups only happen if it hasn’t gone into remission and unfortunately that’s a bit of a lottery….but the majority do come out the other side with no return.
Well done on all your athletic achievements.,
I know a couple of former professional level athletes who will say yes, fine, BUT ...
One was in a wheelchair so ANY exercise initially wasn't much of an option and he credits his recovery to the hydrotherapy that was provided for him by his private insurance - the NHS refuses access for most people - and he did get back to first 10K and then half marathons. The crowning moment was almost getting to the top of Anna Purna IV shortly before Covid - defeated by the weather and not PMR.
The other was determined to continue with his exercise - but GCA and possibly pred said differently and it is something he has struggled with desperately for the last few years.
Everyone is different and you can't make any generalisations in this game.
And I know quite a few who have had PMR. got off pred in anything from 2 years up and have never been revisited. One lady has had it twice, with several years between but has been free of PMR for over 10 years now.
All I can say is congratulations on your awesome achievements, and I hope others see your post and take courage from it. So many PMR sufferers who read this forum have enjoyed challenging sporting activities and fear for their future ability, you have shown that an athletic life can still be enjoyed during and after pred.
Sadly that is not for all of us (and never was for me) and PMR is very different from one person to the next. The less sporty among us must not beat themselves up for their more humble achievements if managing the condition effectively and continuing a good QOL is their greatest achievement.
Well done on all your amazing achievements!! I can’t help with your current ailments but wish you success in getting them sorted out. One of the things I’ve learned from this forum is that, whilst we all have common features of PMR, everyone’s journey is unique. My symptoms started a couple of weeks after a particularly gruelling 50 mile ultra marathon. I didn’t get a diagnosis or Prednisolone until 13 months later. I have worked very hard on sleep, nutrition and to stay physically active. The latter being incredibly difficult. There were days when I just had no strength or energy to run even though my mind was determined to do it. Now, after 21 months of Pred and following a very gentle 18 week training plan, I am about to run a 10k. No PR here - but determined to get round! The old mantra of “listen to your body” is very true when it comes to PMR and exercise. Happy running 😀
Hi well reading your post sounds like music in my ears. I am 75 and a track sprinter , 60,100, 200,400 and 800 mtrs . Diagnosed with possible PRM I am put on a trail of prednisone 20 mg for 10 days , than taper to 15mg for a week and now on 10 mg with a GP visit due on Monday the 13th May and that day I should drop to 5 mg according to the prescription. I felt great after using the 20mg for 10 days, and also on 15 it but noticed some hip and groin aches. On 10 I do feel more aches and use Pharasitimol to solve it, while maybe i should go back to higher but have to see the GP to do that. I love to find out how much sprinting and or intensive training i can do while on Prednisone . It hides it some say and the inflammation is not gone, so does that mean no intensive training at all?
In your experience you say you did all those races while diagnosed with PRM and used Prednisone while trained and raced? I love to understand it right and yes I would love to train and work towards my season on the track in October if the body and the prednisone allows me to . Love to hear your views and experiences.
Intensive training jumping straight in at the deep end is not recommended and can be a real recipe for trouble. Your muscles, both because of the ongoing underlying disease activity of PMR and the pred, are much more likely to develop DOMS in response to what you may think is ridiculously little exercise. It is likely to be far worse than usual and will take much longer to resolve - sometimes weeks instead of days and occasionally it never does properly, because the tiny tears that develop the training effect on healing CAN'T heal or only very slowly. You have to start from scratch initially, as if you were an absolute beginner. You must do as little as 5-10 mins at first and take the next day as a rest day to assess, If that was OK you can add a couple of minutes - rinse and repeat. The rest days are as essential as the exercise days and the increments MUST be very small to avoid doing damage. Once you reach the rest day you feel yesterday's activity you can base your training on that level for a while - preferably though at the PREVIOUS day's level for a week or so. If you don't - cycli can tell you what might happen, and it wasn't nice.
It sounds slow - but like tapering, it isn't slow if it works.
Wow, super-fit! How impressive.
But just to say that most people will get off pred completely for PMR; some within two years, some three and some four or a bit longer. A minority are on pred for many years or have relapses. It is not me saying this, it is from my consultant who is very well regarded on the forum.
1.5 mg won't be doing any significant harm, by all accounts, and some people are kept on a maintenance dose of 3mg or even 5, I believe, but these are people who have tried unsuccessfully to get to 0 on several occasions.
WOW! I admire your enthusiasm and energy in spite of PMR. Triathlete here as well and similarity to your story I was diagnosed with PMR while in training for next race ( Olympic distance though). I think the stress of training/race can push immune system over the edge. That was almost 9 years ago.. at age 66. I just turn 75 this year and am pred free for the last 18 months. It took 7 years to reduce pred to zero, so it is possible. For me it was wery quick to get to 3mg (2 years), but it took another 5 years to of very slow taper to get to zero. Just be patient. Everybody is different and it takes what it takes. If you force it, you may cause flare. I am still active but switched into "maintenance mode" just to stay active with goal of being fit, not racing though. During PMR I ended up hurting my knee so my running days are over. Still bike and swim. FYI PMR impacts tendons and ligaments and makes them weak.
As far as your current ills with feet, perhaps it is time to rethink your goals at this point of your life. We all age and ( in my opinion) to be healthy should be everyone's goal so close to retirement. You obviously are very driven person and can't "just sit around". Perhaps it is time to go back to multi-sports to satisfy your need to be active and use more of other muscles groups in your body. Running is probably the hardest of 3 sports on your body. Whatever you decide, I wish you good luck.
The first thing I thought when I read your post is that you said your arm and leg JOINTS hurt for a couple weeks and your doc prescribed Prednisone. It is my understanding that PMR is a disease of the veins and muscles, not the joints. When PMR hit me I was unable to even wash my hair or brush my teeth because my MUSCLES hurt so bad and failed to function. I couldn't have run 5 feet, much less a marathon. LOL Plus it took docs 9 months to diagnose me (actually I diagnosed myself by internet research and doc agreed with me)
PMR is certainly a disease of the muscles, while arthritis is a disease of the joints. However, the major joints (eg. shoulders, hips and knees) are surrounded by large muscles which keep them stable. Pain in these muscles can sometimes be reported as "joint pain".
Wow! I presume your CRP and/or ESR blood tests were abnormal, but improved rapidly with steroids. Infections and injuries have to be ruled out before considering PMR, as these can also raise the inflammatory markers. Autoimmunity means the immune system is activated without the presence of a pathogen or allergen.
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