My journey so far. 78 yo male diagnosed with PMR October 2018. 15mg pred worked its usual miracle. Steady slow taper (despite mild bout of shingles ) and currently on 8mg. Symptoms still totally masked. Next step will be 7.5mg in another 2 weeks time. Great GP who is happy for me to follow the very good advice on this site and lets me manage my own taper.
Pre PMR I exercised daily, and played squash 4 to 5 times a week. I'm still following the same pattern and haven't experienced any of the often remarked on fatigue or DOMS.
Hence the title of the post. I've noticed the odd comment that suggests that men do seem to have an "ëasier" passage through the illness, but am a little puzzled. P'raps it's having a high level of fitness before PMR that has carried through? P'raps it's just lurking until I get to the stage of needing my own adrenals to kick in? P'raps its just luck?
I'm certainly not complaining, but can't help thinking I'm on a different track.
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squashie
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I've been wondering the same although OH has not had he same regular exercise patern as you he has been in his workshop daily and put tractors on and off trailer from time to time.
I'm waiting to see how he copes this coming spring and summer when he'll be tapering down from 10 mg after March and taking a tractor or two to rallies from time to time.
Hi Squashie! What on earth did you squash? 🤣🤣🤣🤣. I have no idea why you are having an easier time but I am thrilled for you. PMRpro has some theories about it I think. Keep on what ever it is you’re doing. We are all so happy for you 🙏🏻
I’ve read the same on here with discussion about the difference for males and females with PMR, with males having it easier and the condition going into remission earlier. The fact that more women than men have it is also intriguing. So glad you are experiencing a smooth taper and continued exercise. Your GP sounds divine! Mine’s a gem too.
Of note, although I am a woman, I haven’t experienced much fatigue either, except that I sometimes nap in early afternoon due to being up at 2am to take 2/3 of dose, followed by a few trips to the bathroom, so interrupted sleep. I’m tapering down to 9mg, so that may change as I lower. Heard fatigue increases while at lower doses while waiting for sleepy adrenal system to kick back in.
I had gained weight and was pretty much inactive prior to the onset of my symptoms. Since then I have lost weight and enjoy deep water exercises 3 times per week and walking, but unfortunately I’m currently awaiting knee replacement surgery and there is 4 inches of snow down. Dancing is also something I enjoy, whether it be in the living room or on the dance floor. So I’m actually in better shape than I was before PMR ironically.
Here’s hoping we all get through this sooner than later.
Hi Squashie , I like you am very active I tech martial arts 3 tines a week , and train in other arts 3 tines a week without my running and weight training so was very lucky to keep doing that for so long it took me a good 2.5 years with PMR to get back to that but the last 2 weeks with this GCA threat has knocked me so far back at the moment with my state of mind can't Do yoga which I like to do as a supplement every day . I hope you stay on that nice straight track 👍 best of luck
I’m female, 72, not particularly fit, although active, and I too, once on the prednisolone, had no PMR symptoms. I reduced from 20mgs to 2mgs over 2 years and was feeling pretty smug! However, out of nowhere, I developed a painful jaw and found eating and swallowing difficult. Yes, you’ve guessed it, the dreaded GCA. Back on 40mgs. I’m now down to 5 again, with my fingers crossed. So, be warned, you never know what is round the corner.
People with a high level of fitness pre-PMR do often have a different experience through PMR, even women, and some are able to continue at a similar level. However - it isn't the same for them all. Skinny Jonny of this forum was a firefighter who ran marathons and climbed in the Himalayas. When PMR struct he was in a wheelchair. However, starting with a very gentle course of rehab he was back to running in well under 18 months
Exercise at some level definitely helps but everyone is different - not least in what is available to them to keep their fitness up. In the UK I was at the gym every day - aquafit for an hour and Pilates and yoga a couple of times a week - that kept me mobile for the 5 years I had PMR without pred but didn't do much about the pain or the fatigue. Here I have no access to such things at an affordable price - especially aquafit, it just isn't part of the culture and gyms don't have pools as they often do in the UK. People here climb mountains (running, walking, on skis, up the lift and ski down). No-one bothers with gyms except to do body-building!!!! And biy do I notice the difference.
I too have had an easy journey apart from a small flare in June last year since which I have tapered slowly as per advice on here, My GP also follows my, well PMRpro's et al advice from on here! I was fit before diagnosis too, I am female 69, 67 when diagnosed. Long may your symptomless path continue........I just bopped the night away at a ball at the weekend and feel fab!
Can’t answer I’m afraid, other than to say both PMR and GCA seems to affect different people in different ways.
In my case pre diagnosis with GCA I could hardly move and was very fatigued (18 months in total) - and although I was reasonably fit (not to your level) pre symptoms during those 18 months I had to give up most forms of exercise.
Totally pain free once on steroids, but limited exercise, was a carer for late hubby so time a factor, but did increase activity once he had died. All in all a very easy journey with GCA (once diagnosed). The only fatigue I encountered was whilst my adrenal glands were dithering about deciding whether to work or not.
My brother has had PMR for about 6 years now and is just getting to a stage when he feels it is leaving him. He has had a lot of pain and gastric problems from taking pred. He was put on MTX and had a violent reaction repeatedly blacking out.
He didn't exercise in the usual way but as an active farmer was not sedentry.
Hi, I am 67 yr old male with a similar background of fitness to yourself, I worked through pmr starting with hot tubs, electric bike then spinning and eventually with a successful taper back to circuit training, in all now training 6 days a week, however. However I have a mild case of fibromyalgia, which is less problematic than pmr luckily. Last night I had a sleepless night and today could not do any floor exercises due to back pain, so this is an attack which from experience I know will get worse and last several days. There is nothing which will help, the epileptic drugs which relax the muscles cause a depression in the mornings, so just have to soldier on, and find alternative exercises on bad days. DONT GIVE UP
pre-PMR fitness makes a huge difference in most cases. Everyone benefits from being active, but if you get back to regular exercise, it actually prevents steroid induced muscle atrophy and also removes some of the stiffness that is so common with PMR.
Just be careful because prednisone mask some of the muscle pain so it is easy to overdo. You will understand this after you get to low dose, say below 5mg.
I am also 78 - well, in March and was also fit and active before I started two and a half years ago, and used to walk my dogs over the sand hills every morning, was a keen gardener, planning and designing my own gardens and doing the heavy work as well. I have GCA and PMR. I am now a useless lump of nothing, fit to do very little and so fed up. I have a balance problem so even though I would love to go swimming I am too scared. I pray that I am a lot better in about a year. Was down to four and a half mgs of steroid then had a flare and am slowly coming down again from 20 mgs to where I had to increase after the flare. I am looking forward to the summer weather so I can hopefully at least potter in my gardens and get fitter again. I hope you stay as strong as you are.
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