13 months in

Often the problem can be a loss of muscle strength or muscle mass. Assuming you don't have osteoarthritis? If you take up a strenuous exercise after being relatively inactive for a while you should be careful not to overdo it. It takes longer for PMR patients to recover from the minute tears in muscle tissue that exercise causes. So make sure you're ready for the strenuous exercise by building up the requisite muscles first, and when you get there, don't do too much or for too long at a time. Build up slowly. It's like tapering pred. Slow and steady wins the race.

Can you get physio? Also, I've found there are really helpful physio-type exercises on line. Again, be careful.

Sometimes you have to do really boring small exercises to build up small muscles and you think they aren't doing anything, but they are, they are getting you ready to do the bigger stuff.

What pain killers are you taking? Maybe you should be taking more pred instead.

Well, that wasn't hard to find, thank you Google!

https://patient.info/forums/discuss/pmr-and-excersize-experiment-in-progress-492585

You must bear in mind that if - as I suspect - you are not taking enough pred to manage the inflammation that causes the pain and stiffness of PMR, then your muscles and joints are likely to suffer more from certain exercise. There is no virtue in not taking enough pred to manage that inflammation - it too is doing damage to the soft tissues and blood vessels, putting you at increased risk of other disorders such as peripheral vascular disease and even some cancers. Paracetamol rarely helps in PMR pain and it does nothing for the inflammation. And it has adverse effects too - and apparently it is being warned against using painkillers with regard to Covid!

If you are concerned about weight gain on pred - cut carbs, especially processed ones and added sugars and some fruit and veg with high carb content. That helps reduce the fat deposition that pred causes. It also reduces the risk of steroid-induced diabetes.

It takes half of patients with PMR up to 18 months to get to 5mg - you were well ahead of the curve. But you must remember that you are never reducing relentlessly to zero, you are looking for the lowest dose that gives the same result as the starting dose did. PMR is a chronic illness, for half of patients it takes 6 years or more to get off pred. Only 1 in 5 are off pred in a year, a third by 2 years. If you have hip and groin pain then that is probably either the PMR not being controlled in those areas or you have trochanteric bursitis. Either way, if you do steps or rowing that is likely to get worse - and it can become so painful you can't move at all - I know from experience! It may help if your doctor will give you steroid shots to reduce the inflammation - bur at present you don't seem to be able to even see a doctor f2f in the UK. There are exercises/stretches you can find online which may help and are worth trying.

But overall? My advice would be to take enough pred to manage it and then start to reduce again to find the right dose for you. I was also young when PMR appeared, younger than you - and 15 years later it is still active. Pred cures nothing - it is a management strategy to allow you a better quality of life until the underlying chronic autoimmune disorder that causes the symptoms has burnt out and gone into remission which it does for most patients eventually.

Hi Ian,

Just read your post and other's response and this is what I would do if I were you:

1- I agree with other posters that you are probably too low on your dose and that inflammation/pain is not under control. I would suggest to go back to the last dose that you had no pain and/or stiffness similar to pain/stiffness response your body had after the first dose of pred.

2.After you have PMR symptoms under control, you need to work on stretching your muscles in hip/groin area that are currently hurting you when you try to walk. Some of that pain/stiffness will be gone with proper dose, but the you need to relax those muscles as well. What I usually do is have 15-20 min gentle walk to worm up the muscles and then do stretching. For groin area stretch find steps with railing (to hold for balance). Stand about 70cm to 1m away from the first step, and then slowly extend one of the legs to first step, lean forward and put your weight on the front leg while stretching groin area. Hold a position for 5 sec and then shift weight on back leg. Do 10-15 reps for each side. Be gentle and don't overdo it, especially first time.

3.For hips, best is to lay on your back, lift one leg and put your hands under the knee. Gently test your flexibility, first by pulling your knees towards your chest, then same side shoulder and finally towards opposite shoulder. You will find which direction causes tension/pain and work on relaxing those muscles. Always do that with warm muscles, NEVER try with cold muscle. I usually walk after the stretching another 15 min or so to get the blood flowing again.

4.If possible, find good physio to assist you with recovery. While you try to rebuild your muscles, good physio can help with proper stretches and massage. It really is important in the first year of recovery until you learn to do it on your own.