Hi all
Now alternating 10 preds one day 9 the next then 10 on advice from the rheumatologist at the WSH
I guess I’m doing a bit to much but damed if I’m going to let the stop me
120 mike bike ride yesterday on the Ducati to day I can barely lift my arms let alone hold them there. Is this symptomatic if PMR, a side affect of the steroids, or ? Still utterly exhausted but 4pm which is fruits I need to work with my Son each day ( the joys of the self employed ) any advice welcome
Martin
Hi Martin,
"I guess I’m doing a bit to much but damned if I’m going to let the stop me"
Well that's your choice, but you must then be prepared to suffer afterwards! Maybe not so far next time, biker boy - try 60 instead of 120 miles.
10 mg one day, 9mg the next sounds a harsh way of reducing. Might the pain be steroid withdrawal. I know the rheumatologist suggested it, but you might find it better to do 0.5mg drops using a dead slow approach. Eg 9.5 one day 10mg for 6 days. 9.5 one day, 10mg for 5 days, 9.5mg one day, 10mg 4 days etc etc. Easier on the body.
No, this is not symptomatic PMR. It is much more likely to be delayed onset muscle soreness which has been exaccerbated by the pred and the PMR. As an athlete I assume you know about DOMS and how it is caused? I will explain if you don't. The development of DOMS is more likely when you have PMR and made more likely with being on pred. If you persistently overstep your body's limits you will suffer it.
"I guess I’m doing a bit to much but damed if I’m going to let the stop me"
It is your choice.
You have a chronic autoimmune disorder for which there is no cure, just a fairly effective means of management to allow you live fairly comfortably until the autoimmune part of PMR has run its course and burned out so it is no longer attacking your body tissues and causing the inflammation that causes the symptoms. In the meantime, the a/i part of PMT is causing an effect on your body that is similar to that of flu. I assume as an athlete you are aware that you shouldn't really even train when you have a viral infection because it can cause damage to the muscles?
I can only say again - it is your choice. Nothing we can suggest is likely to change what you are experiencing - only you can have an effect on it by restricting what you do to what your body is capable of. You must decide what is most important to you and find what you can tolerate. We can't do that for you.
I’m interested in DOMS. What it feels like and how to distinguish it from PMR symptoms. Eg does Dom’s worsen as you get older? I’d be glad of some help.
DOMS is the sore muscles you get from too much exercise at one time, especially if you didn't train beforehand. You can develop it at any age and whether it gets worse as you get old will depend on whether you keep up your training level for whatever activity you do. In PMR it tends to bite if you try to do too many repetitive actions of any sort, and too many reps can be just 5 in some cases.
For someone with PMR a good way to assess it is to try a very small amount of exercise and see if you are sore the next day, if you aren't then you can add a few minutes - and I mean FEW, if a 5 mins out and 5 mins back walk was OK, add a couple of mins each way and reassess. Do that until you can feel the effects of the exercise on the rest day. Go back to the previous level and stick to that for a week or so and then add 2 mins again. Assess. Rinse and repeat. It sounds slow but the time soon mounts up and you will be walking for over half an hour in no time. Without having done any damage or feeling sore. If you try to do too much all at once you will have awful muscle pain which will stop you doing anything for days and may even make the PMR worse - some experts think that it is possible to trigger PMR by excessive physical effort. If there is one lie in the sports world it is "no pain, no gain".
I've got the same problem. I'm a newby but previously competitive in cycling. I'm learning that very little intensity will keep you "flared" or in a condition that increases your inflammation. My tell tale areas are my hamstrings and hands, wrists, fingers. If I've gone too hard, these components will tell you. I am choosing to be ultra conservative with the inflammation because I started feeling GCA symptoms and this is my 2nd bout with PMR, which makes me an excellent candidate to progress PMR to GCA.
What I've learned is that you've got to find your baseline first by only light walking a few weeks, then add no more than 10% a week. Swimming is also a good exercise to keep your body honest with its inflammation. But too intense on the swimming can also keep you inflamed.
I choose not to cycle or run yet due to the fact that it keeps my a/i agitated and inflamed.
Believe me, you've got to find your base such that you are ensured you are not inflaming yourself by overdoing it. Otherwise, your condition will last longer and make you more miserable. Too much or too intense exercise will only keep your auto immune system excited and inflamed. It's a learning experience because the prednisone gives you a false sense of security.
Eating sugary foods such as icecream or even lots of white bread, and yes.. even Alcohol.. . Processed meats will also give me the flaring feeling the next day. The same flaring feeling that I get with overdoing things. It's the same inflammation levels.
Yes and you'll end up taking more pred if you continually overdo.
I have no doubt you’ll fight to the bitter end to keep doing what gives you joy. I dread to think what my husband would be like if he couldn’t ride. It’s down to choice isn’t it? Swallow it, back off and try the advice given here and build up or live for now, cane it, but accept that bodies tend to give up eventually if you don’t listen. It may also be a toss up between being fit enough to work or a useless heap but with a smile on your face. Life can suck at times!
Don't get depressed over this. Your "competition" now is to find a way to gradually work your way up to a level of physical activity which gives you satisfaction but is not so much it hinders your recovery. There are others on this and the Patient forum who have managed to find that sweet spot. Like everything else about PMR, however, it takes time. If I've learned one thing from this annoying disease, it's patience!
You know really, why you feel as you do. There are physiological reasons why we cannot punish our muscles in this way. However joyous it feels at the time, it is doing you no good, in the long run. Pacing is the genius of managing this condition and not developing another. Wow though! I do get it.
If the alternate dosing does not work, try going down by half a mg from now on, and take your time.
Well you should have thought of a better title:- How to make you muscles worse.
PMR = oygen supply to your muscles is impaired.................
Have just had 2 sessions of acupuncture and can already see it’s helped. Worth a try.
I’ve resisted answering, (thus far!) but never has a proverb been more accurate. “You reap what you sow”.
Pred can only do so much, the REST is up to you!
Well that told me 😀 thank you all for the response, yes I get it do less, pace yourself just hard when you have always rushed around
But thank you all.
Weakness and pain with GCA
Weakness in Thighs - how to remedy
Muscle weakness from standing
Understanding origin of weakness 
