advice please

I am never pain free.  I’m going to 6 mg using the dsns method. I’ve never been pain free; if I do too much ( which believe me is nothing) I pay for it the next day.  Increasing the pred doesn’t help all that much.  My pain and stiffness is in my groin and legs, sometimes in the night in my hands and feet. Hope you feel better soon! 

I am one of the fortunate ones. Prednisone for me eliminates completely the pmr pain. Prior to the pmr diagnosis and prednisone, both shoulders felt like they were dislocated. My hips ached. My hamstring muscles on the back of both legs felt like they had been hit with a baseball bat. My hands regularly cramped and I had an ache all over feeling. I had great difficult getting up from a chair, I could not sleep lying down and I could not drive. One dose of 60 mg prednisone and everthing went away. I am now down to 4 mg and still no pain.

You might have fibromyalgia as well as PMR. I've known a lot of people in my PMR group on Facebook and other places that have both conditions. So I don't think it's even a very unusual situation to suffer from both diseases.

Hello Lindsey. Can I ask when you started on Prednisone and what dose did you start on. I am thinking you might have reduced too quickly. Have you ever increased the Prednisone to see if helped the pain. Cheers Kathy

I have had a heart bypass and I also have either PMR, Rhuemy. , no diagnosed yet, but every time I get a pain in my chest I question what is the cause? I just try go keep my cardio. Dr. aware of what is going on.

You will stand a chance of losing the weight if you cut carbs drastically - it has worked for a lot of us, I lost over 35lbs of PMR and pred-associated weight and have kept it off - as long as I don't eat more than a minimum of carbs. No cakes, bread, rice, pasta etc etc and very restricted root veggies or fruit. Both have high carb levels and are enough to prevent me losing weight. It is to do with pred changing the way our bodies process carbohydrate. It really is worth trying.

The level of pain relief you achieved with your starting dose is your guide - if the pain increases as you reduce then you have gone too low. Some people are nearly pain-free, others are not. Not all the left-over pain is PMR though - myofascial pain syndrome and piriformis syndrome are both more common in people with PMR and as someone has already said - you can have fibromyalgia too. The pain that goes with pred will be PMR and other muscle-related things. 

I get returning pain that isn't directly PMR, it is due to myofascial pain syndrome and it mainly affects my lower back, shoulders and neck. Some of it will go away with a slightly higher dose of pred. There are lots of discussions about it on the forum. MPS causes tight/spasmed muscles and can irritate nearby nerves which then cause referred pain. It causes 3 pairs of trigger points to form on either side of the spine, in the shoulders, about rib level and in the low back where the babies dimples are. The rib level pair can irritate the nerve supply to the ribs and that can lead to chest pain.