Muscle weekness/spasms

Hi - sorry to hear your problems. First of all - that was a very high dose to be started on for just PMR - was there any thought you also had GCA since that is the usual starting dose there? The more usual starting dose for PMR is 15-20mg which does have some side effects but nothing like what you get at 40mg. If it is any consolation you won't have had all the side effects on the list - there are 82 and counting! But I do know how you feel - I developed a fine dark beard, massive weight gain and muscle wasting amongst other things!

It is possible that you have something called myofascial pain syndrome - PMR is caused by substances called cytokines which cause inflammation being released into the circulation. In MPS these same cytokines form trigger points and hard knots in the muscles - and the result can be muscle spasms and irritated nerves leading to referred pain. The trigger points form in the shoulders in the trapesius muscles causing pain in shoulders and neck, alongside the spine just above your waist causing pain around the rib cage and in the shoulder blades and in the lower back sort of where a baby's dimples are causing pain in the lower back and upper legs. There are a few ways of treating this including cortisone injections into the back muscles which is how mine was dealt with the most recent time but a much gentler method is using Bowen therapy and quite a few ladies on the forums have tried it and got a lot of relief. Use your search engine to find info and links - I'd give you some but they'd be blocked probably. There are also videos which show how it is done and talk about results - and I promise you they aren't exaggerating! You will know if it will help by 3 sessions at the most - often sooner. One lady was stuck in bed, got to the loo in the next room using a zimmer. She managed from the car to the room with a walking stick and a friend supporting her on the other side - there wasn't room in the car for the zimmer. After a 1 hour session she walked back to the car and had to go back to fetch the walking stick!

Other options include seeing a physio for manual mobilisation of the trigger points or cortisone injections - I had to have repeated injections in my back. 

Weight gain - yes, been there, got the t-shirt! With one form of pred I put on a lot of weight in the typical places. I was switched to another sort of pred and with a lot of discipline I have lost 38lbs in weight in a couple of years while still on pred. I have done it by cutting carbs very drastically - I used the 5:2 diet as well to get the weight loss going and it helped redefine portions for me but it is definitely carbs that make the difference for me. I'm not fanatical about it and eat a pizza now and again or have dessert when we are out if there is one that is worth it - but in months where I've eaten more carbs overall I don't lose weight. Cut the carbs the next month and I lose a couple of pounds. Carbs also make you retain fluids so it might help the ankles.

Something else that might help the fluid retention is manual lymph drainage: patients who have had mastectomies often use it to remove the fluid that gathers in their arms but a physio here did a single session for me, concentrating on the leg that was worse - within a week both legs were totally back to normal shape. I had ankles again! Might there be any other health problems that might be causing the fluid retention? If so do check with your GP - BP and so on need checking regularly.

Hope this gives you something to think about - do ask if you want to know any more.

Hi Penelope, like yourself I was diagnosed November just past with PMR and was put on 20mg of pred.  I haven't seen a Rheumy yet but my gp is going to chase it up.  I stayed on 20mg for 9 weeks, then went down to 17.5mg for 6 weeks and am now on 15mg and yet I still have aches and pains.  Lke yourself I have put some weight on and cannot get it shifted.  I went back to my old slimming club and in 7 weeks I lost 1lb, soul destroying.  I am going to try the 5:2 diet and was wondering how you are getting on with it.  I even cut out carbs and it still didn't make a difference and that has been my experience hence wanting to attempt the 5:2 diet.  I have no appeitite and haven't had for 10 or 12 years.  But I am finding it difficult to see what foods are about 500cals on the fasting days.  I don't like fancy foods, I just like a plain old potatoe, meat and veg, or even for dinner sardines on toast, I am not a big eater.  Anyway I would be grateful for any tips on the fasting days.  Good luck on your journey.    Pat