I was diagnosed with PMR in December 2019. I was prescribed 15 mg of prednisone (I think, can't quite remember exact dose) I have been on 4 mg for the past 3 years, I cannot seem to manage at any lower dose)
I manage to continue walking my dog daily, cross-country skiing 10 times each winter and a workout at the boxing gym twice a week. For the past year I have been in agony for days after any of these activities and am getting very frustrated. I push through as I always do but am wondering if I should be taking more prednisone to get the inflammation under control. I have a difficult time not being active and it is very hard on my mental health.
I would appreciate any information that may be of use to me in this PMR journey.
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Boxinglife88
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You are suffering DOMS - delayed onset muscle soreness - because of your activities. Before you developed PMR your healthy muscles could do more before it set in and then recovered over a few days. Now they are unable to tell you you are doing too much - but even when they try you are ignoring the signals and "pushing through". As a result, the damage done in each exercise session is worsening the situation and the muscle fibres never get a chance to heal.
I use the words damage and heal advisedly - the training effect in muscles happens when the connections in muscle fibres are broken, they heal over time and that leaves the muscle "trained" and able to tolerate more than last time. Your PMR and pred-abused muscles are being asked to continue even after that has started happen so even more micro-tears are being created, then you exercise again while there is still some pain, a sign the damage hasn't healed, and so they never heal.
This is inflammation - but it isn't an inflammation where increasing the dose of pred will help. No-one is saying do nothing but you DO have to be realistic and understand that what you are doing is creating a vicious circle. If you had broken your leg, I assume you would understand that ignoring the pain and walking on it wasn't going to allow it to heal. This is no different.
Some experts think that over-exertion can extend PMR problems and even trigger it in the first place. It is your choice but if you want to be out of pain - it isn't more pred you need but some therapeutic rest.
I’ve lost count of the posts over the last 8 years with a similar story. I remember a couple where a sports event brought on the PMR. Many of us were used to high levels of exercise and had to learn that there is a new order for now. For so many it is a way of coping and feeling fit and strong is like oxygen. It is difficult for sure!
I have GCA and PMR. I started at 60 mg of prednisone, and have tapered down to 10. I also take weekly Actemra injections. I've been running almost 50 years. Before the PMR and GCA, I was running about 3 days a week. After I started treatment, I was still able to jog some. But once I tapered to below 20 mg of prednisone per day, I started having muscle strains in my legs when I ran. One of the strains was bad enough to swell and bleed internally. It recovered pretty quickly, and didn't cause any permanent damage. But I decided to give up strenuous exercise for the time being. I'm still able to walk and hike as much as I want, and I lift weights and stretch every other day. I've noticed recently that I can't do pushups anymore, because of discomfort and tightness in my chest muscles. I suspect these problems are from the prednisone. I'm hoping they'll clear up if and when I get off the prednisone. Not being able to do strenuous exercise is definitely the worst side effect of the medications for me, once I got past the insomnia early on.
Nice hearing from you! Wow, you have come a long way from 60 mg. I think my biggest problem is going to be mentally, I am just wired to be super active, but I'm tired of being so sore everyday. So happy you can continue to walk and hike.
Thanks! I have some minor soreness a lot of the time, but it isn't painful or uncomfortable and I can always relate it to what I did in the previous days. I'm sorry you can't do any of the activities you enjoy. Have you tried doing anything in a pool, like jogging? The water helps protect your joints and muscles.
As I read though the thread I'm thinking, "...needs to find a less vigorous sport...❗" If you can find something which gives you a similar reward to those you have enjoyed, but which right now are finding not a good idea, that will be a good result. Do let us know how you get on. Your experience may help others dealing with similar situations. 🍀
My thoughts exactly -would be much too much for most. But then we all have our own starting point -but whatever that was it still requires modification!
I would appreciate any information that may be of use to me in this PMR journey.
To be brutally honest -a reevaluation of what you can and can’t do -and perhaps your mantra of pushing through isn’t working any more. ..and if you’ve been like that for the last year -then why haven’t you sought advice before?
PMRpro has explained about DOMS which seems to be the main issue -but if you cannot get below 4mg then your PMR is not properly under control -so you may require extra Pred for that reason -but not just to enable you to maintain your current level of exercise.
Very good point! Thank you for your words of wisdom!!I honestly thought that it was just me overdoing it and a part of PMR.
My Dr. doesn't know much about PMR and I do not have the opportunity to see a Rheumatologist. My Dr. will however, listen to any info I can dig up and she has a few patients with it.
Are you familiar with the concept of filling your life with boxes? Before my PMR and ? GCA started in 2017 I was also very active. I played golf, tennis, I had a horse, skied and had a 1 acre garden. Now, I have lots of boxes filled with other activities and interests. I'm still very active but my activities are kinder to my body. I've just returned from a ski trip in Austria and will return in 8 weeks so I've decided to improve my German....another box. I am learning to play the piano....another box. I walk to keep fit....hills are great. There's a lot you can do with PMR, but gyms and intensive repetitive activity are a no no I'm afraid .
I have had similar issue several years ago. What I found by experimenting is that slow endurance exercise was helping with PMR, while high intensity activity did not. You have to pick some activity that you like that you can control pace rather then boxing.
PMRPro explained the effect of intensive exercise, muscle damage and need for recovery. I can only add that pred also changes metabolic process of muscle rebuilding by blocking or slowing down repair of the muscles. On the other hand long slow exercise promotes blood flow and muscle recovery.
My advice - First find the proper pred dose to control PMR. Then add some endurance exercise that will keep you fit and also help you release some stress (here I assume that is what you are referring to as "mental health".
I suspect if you reduce the most strenuous of your activity and Most Important stop pushing, but maintain a decent level of activity to keep muscle strength and cardio good, you will start to heal and will be able to gradually build things up to a reasonable level in your chosen sports. However, there is also the issue of the menopause which effects strength etc over time. I have found that I have had to re-evaluate my activity in my sixties - GCA/pred has accelerated this, of course. It's vital to maintain strength, flexibility and cardio but we can't do it the same way without damage, particularly to joints. Activity like studio pilates and some types of yoga allow us to understand the body and use it better. This is very mentally helpful because we all build up bad habits in exercise. Here is a link to a website called menopause yoga which uses yoga as the basis for strength building. I am going to post about it separately soon. The teacher is exceptionally good and sometimes does freebies. menopause-yoga.com/forwomen
Hi there Boxinglife88, I've read all the advice you've been given and for me it's all very good. But I'd just like to add a suggestion. Swimming & Aqua exercise. I've a history of cycling and walking since quitting soccer, rugby and later squash. Tried swimming but I'm not a swimmer - I thought. After my diagnosis of PMR in Dec 2023 I took up swimming and aqua steps. It has a lot going for it. It's really more gentle on the muscles and connecting bits and I was able to tune the level of exercise to suit where my PMR was. I can overdo the laps but restricting myself to 8 - 12 laps and the aqua exercises so that I have a good workout, still having to tough it out though, and with not much reaction the next day. For the Aqua exercises you do need a good coach and we are lucky in Edinburgh to have a Leisure system that has them - they also have real Aqua Steps for fit youngsters and these are to be avoided. I've been at Aqua steps now for a year and slowly it has producing results as I feel my muscle tone increasing - but its takes patience and months. It may be worth a try. Good Luck.
Swimming is great, so is biking. I have started swimming after just few months of PMR. You are correct it is very gentle and relaxing. Gradually I have increased length and now I am up to 2.5Km sessions (100 laps) ! I live close to mountains and hit trails 2x a week for (prefer mountain biking and nature trails to road) for about 1.5h rides. Both activities helped me while I had PMR for 5 years. PMR has gone into remission 2 years ago. While muscles mass never recovered completely, my endurance fitness did recover 100%. So there is a hope, don't give up trying.
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