I have questions for the folks on this forum who no longer have PMR.
Have any of you returned to working out at a gym?
Were you able to rebuild muscle that was lost during your PMR journey?
What were the hurdles you encountered increasing your physical fitness?
I know a lot of folks are older. I am 59 , and can't imagine being this unfit for the next 20 years or so.
Any info is helpful and I thank you in advance.
it’s a question constantly on my mind too. As I taper lower, what the end game will look like.
I had GCA not PMR, so slightly different scenario. But despite, or maybe because, having 3 joint replacements post GCA, my muscles have recovered.
Had GCA between the ages of 63-69, so obviously not as young nor fit as you ore diagnosis, but now at 75 certainly feel better in myself.
Never was a gym bunny, but did yoga pre GCA for years, and took up Pilates whilst I still had GCA to strengthen legs in particular- still going strong with that.
Sure there are many who have returned to gym, but not sure remain on forum once recovered from their illness.
May be some replies in this - healthunlocked.com/pmrgcauk...
Or in related posts related to that link…
Thank you
Everyone is different. We don't all return to fitness.
Thanks
Dear Paleolady. I have GCA (the large vessel version) and the disease is in complete remission. I did a lot of sport before I got ill. I live in Germany and thus I got a combination of prednisolone and Actemra directly after diagnosis, which helped to taper pred to zero within 5 months. I am still on Actemra approx 1 year after stopping pred. As soon as I was below approx. 10 mg pred I started carefully exercising again and continued listening to my body. After having stopped pred I was almost back to the exercise and fitness level as before the disease. This year I cycled 6000km until present and I am back to normal.
Good to hear!
So happy for you! thank you for sharing your story. I was diagnosed with GCA about 15 months ago currently I am on 1MG pred. How do you rebuilt your muscles and arms back? I lost about 15 lbs which I did not need to...I have never been a gym person but I do walk daily at least 30 min and do lots of gardening and cleaning my backyard. Any ideas ? very self conscious about my arms and legs. Thank you
I lost a lot of muscles (1) between the onset of the illness and the diagnosis (approx. 3.5 months) - before I was cycling (race bike, mountain bike) and trail running regularly and (2) during my first 3 month of pred. But then I slowly started exercising again (running and and cycling (first mainly on a stationary bike)) and increased intensity of the training units step by step. I tried first to stay below 130 heart beats per minute but when I after some time noticed that it worked well I also increase to the lactate threshold. So that was all gradually and I always listened to my body. But I noticed that I always felt better after excercising. So I did nothing special for building up muscles - just continuous exercise with slow increase in intensity. It took me approx. 8 month (after diagnosis) to more or less completely recover my fitness. But was/is certainly my personal strategy and might not necessarily suit others.
I've never been to the gym.I couldn't imagine going back to work now after having pmr for 5.5 years,I wouldn't have the stamina.I'm feeling good after 16months off pred though.I can walk,climb hills,play with grandchildren, do gardening,clean windows etc without pain.I feel a bit creaky somedays but I'm 6 + years older!.
It took me nearly three years to be 'pred zero' (circa October 2020) and to feel free of the symptoms of PMR. Since then, I would say that I have returned to full fitness and am able to do everything that I could do before - given that I am now 4 years older (currently 64).
I didn't 'work out' in a gym but my work as a Live Events Technician does involve quite a lot of physical effort - carrying and pushing flight-cases, building stages, climbing ladders, etc.
So, my answer is yes - I think that I am fully recovered and as fit as I was before. But I am aware that men often have an easier rider than women with PMR so I consider myself to be one of the lucky ones!
I am newly diagnosed with PMR was crippled with pain before diagnoses. Now on high dose Pred. This site and the postings have been an enormous help and support for me and thank you to all that take the time to post. This post gives me great hope and tells me there is light at the end of the tunnel, thank you
Hi, I can not say I officially no longer have PMR as I have not been given 'the green light' as such, although the rheumatologist nurse discharged me last month having taken my last 0.5mg pred on 1st May this year, so I would say I am recovering from PMR. I seem to be doing ok, touch wood, although on waking and during the night I get stiffness in my arms. I am 61 so maybe this is a bit of getting older now, and I do find that paracetamol or anadin helps to sort this out. As far as going back to the gym.....I can't imagine I'd find myself doing that yet, but I have just started walking up to 10,000 steps most days, and a couple of days ago I managed some stretches (legs and abdomen) after one of my walks, and I felt great! It was like being back in the gym! It gave me such a lift as its been a while since I've felt able to do this. I would love to be able to get back to a class of some sort, but am taking it nice and steady. For the moment, I'm really pleased I've got this far as we all know how difficult it can be to do ANYTHING at times with PMR. So my advice, from my own experience, is to be patient, don't overdo things, little and often as and when you're able, and hopefully you'll rebuild those muscles and get some level of fitness back. Good luck!
Thank you!
There aren't that many regulars in that position - few hang around once they finish pred.
I went to the gym all through untreated PMR but I couldn't do machines. I did aquafit, Pilates and yoga. And I have used some stuff in physio here. Even with PMR and pred it is possible to maintain muscle.
OTOH, Skinnyjonny did better than just the gym - he climbed Annapurna IV post PMR
healthunlocked.com/user/Ski...
He didn't quite get to the top - but that was due to weather not his fitness.
I am 59 too. Have had PMR for 6 years so far. Before developing it I used to do Zumba, ballet and Pilates classes. Now I can only do some gentle swimming and a sit in the sauna afterwards. But I hope to get back to classes at some point in the next few years. 🤞
I realized that it is too late for you, but why wait until you are off pred? I was active before PMR and as soon my dose was below 10mg ( ~ 6weeks -2 months after diagnosis) I restarted carefully my training. In less then a year I was at pre-PMR level of fitness and my dose was at 5-6mg at the time... Now after several years I am at 0.5mg and still active. Besides regular biking and swimming there is no shortage of projects around the house :). For example, I just started a project that require me to bring 30+ bags of concrete mix (each bag is 25Kg or 55lb) loaded on the truck at store and unloaded it at home. And I am older then you :).
I have been walking the whole time. Several miles a day and I take care of my animals, garden , and we heat of home with firewood. I am carrying wood constantly during winter months. I was speaking of weight lifting to build muscle. Thank you for your reply.
I caution (others not you, you already know this) a return to heavy body building while still in the throes of PMR. I can tell you as a former body builder lifting heavy weights for many years, once I got PMR, my muscles could not heal and I had to eventually give it up. I have been on steroids since 2017 and any time I try to push myself to do too much, the results are never good. However, at age 70, if my PMR ever does go into remission, I will be right back to the gym lifting, though probably using less weight. I have, until this year when my knees gave out, also been able to hike, jog, bike ride and kayak if done carefully and not too intensely. After my knee replacements I'll get back to those (tho not running). I miss weight lifting a great deal! Now if I just mow the lawn or use the wheelbarrow to move dirt, I pay for it. Sheesh. So annoying.
I will heed your advice, thank you.
I was diagnosed PMR at 76, yoga twice a week, gym afterwards, danced, jogged, and walked everywhere. One knee replacement two years in, and just this year, at 84, one hip replacement plus PAD medications, 2 1/2 mgs pred. I am feeling better than I have in years, almost feel like running but realize I am older and limited movements because of the ops. My walking has improved and I am enjoying what I can do. No desire for gym but flexibility improving every day. I carry and stack heavy wood for wood stove, trim bushes, and go up and down stairs daily.
I also have two wood stoves. Thank you
My sister’s godmother had PMR in her 60s for around eight years. She is now in her 90s and looks fabulous.
I went through PMR for 6 years. In the beginning it was tough doing anything but at the lower doses and using PMRpros dead slow reduction method and was able to totally resume a very active lifestyle UNTIL i got slammed with GCA recently. So hang in there. It gets better
Thank you...you hang in as well!!
thanks for asking the question. It’s good to read all the replies that are light at the end of the tunnel. My weediness makes me feel down quite often but hopefully my future is a bit stronger! ❤️
Good luck to you!
I had PMR for 3 years and it took me about 6 months to build up my muscles afterwards. I'm almost 79 now. I can enjoy walking now and I go up hills without getting breathless or my legs aching so it's fine. I never went to a gym, but I think I'm fitter than quite a few of my friends who are the same age as me. I felt like 90 whilst I had PMR and now I feel more like 70. So don't give up hope.
Such inspiring stories of getting back to levels of fitness and build up of muscle strength. I was diagnosed with GCA July 22 and have had a roller coaster experience. I have maintained gentle exercise when I can but have followed the listen to your body mantra and had a lot of rest.
A thread or sub-group for all long-term PMRers
Return to adolescence and not in a good way!
What if I have normal ESR and CRP?
acupuncture?
