Painful shoulders

I seem to be asking advice a lot lately. I'm not sure if this is a polymyalgia or RA thing as I have been told I have both. I suffered with my shoulders when first diagnosed with pmr two years ago. They responded to 15mg pred very quickly and haven't been too bad most of the time. The last few weeks I have felt a pain right inside the joint which gets worse as the day goes on and hurts to lay on in bed. Occasionally I had trouble reaching into a cupboard but now it seems more or less pain free when I wake but after a while of moving I'm in a lot of pain and can't lift my arms, especially the left one which has always been my good one as many years ago had tendonitis in the right which turned to frozen shoulder. However that hasn't been giving me any bother until the pmr started. Does anyone think the shoulder is more like pmr or arthritis. I know if I up my steroids it would improve but I am constantly being told not to put them up. I take 14mg pred at the moment plus 15mg methatrexate which isn't working, so it has been suggested I try etanercept. I have had an x ray and am just waiting. I was so excited at seeing a rheumy who I actually like plus him thinking this new drug might work that I never asked how long I would expect to hear the next step. Does anyone else have any idea. If what I have is pmr would the etanercept help that at all?I don't know why I have never been told to try a higher dose of steroids, the highest I have ever taken is 15mg.

15 Replies

  • I had exactly the same experience. It startred with the shoulders, tendonities in the right one, hard to reach and so on. Polymyalgia was the first diagnosis but it soon developed into RA. I did not want to start with pred knowing the toxic side effects on high doses. Pred helps like magic in PM. Evidently you needed more medication so the right diagnosis would be RA, like in my case. I took it easy and started with AIP diet before going on to hard meds. After three months my shoulders were fine. Im am still taking one step at a time and have not , yet at least, needed hard meds. Good luck!

  • Hello. Where do you get information regarding the autoimmune protocol diet please. I am so confused about food at the moment!

    Many thanks


  • I had mine worked out for me by a naturopath but you should be able to find diets on the internet if you find anti inflammatory ones or diets that leave acidic foods out.

  • Thank you.

  • Hi Sandrajp,

    Sorry you feel confused. It is no wonder. In this jungle of meds and treatments you are dropped into when diagnosed and what's worst you have no guide to give you all the information and help you need.You are too often left on your own to start your own research, which usually feels overwhelming in your present condition.

    If AIP interests you, it is well documented on internet. You can find help ans support as well. After having done my own research bought the " Autoimmune Paleo Cookbook" it helps you to get started from scratch and gives all the information you need. Good luck!

  • Many thanks. I have been following a high carbohydrate, plant based diet a la Dr. McDougall and chums - the AIP seems to say no to rice, mushrooms, tomatoes and spuds which is what I have been living on!! Oh Gawd, as you say what a mine field. Will look up on the internet. Many thanks Simba and May The Force Be With You!


  • Yes I was quite flabbergasted in the beginning. Had been keeping to veg based diet with little fat, loved bread aso.

    There is a scientific and biochemical reasoning in this diet and there is so much proof for its efficacy that can no longer be ignored.

  • Not sure if biologics do anything for PMR, but I would think tendonitis and enthesitis (inflammation where tendons join onto bone) would be highly likely to respond to biologics - and a whole lot less potential long term side effects than steroids.

  • I too have very painful shoulders and like you can't reach up high for things. They were agrivated last year as following a hip replacement I was on crutches then walking stick for 5 weeks .I'm having a first round of Rituximab next week and I'm hoping it will help as there is arthritis in the shoulders. Failing that will have an ultrasound. They are blooming painful

    I take paracetamol and use gel. Any thing stronger and I'm off with the fairies!

  • Do you have pmr too? I'm not sure which is affecting my shoulders at the moment. It feels like when I had tendonitis a few years ago.

  • I have RA and osteoarthritis. I've had steroid jabs into shoulders in the past but it looks like it could be tendinitis now.Will have them reviewed in July to see if the rituxamab has helped them. It's so painful isn't it especially trying to dress?

  • Trying to dress, reaching for things, even just moving them at times. I am afraid they will turn into frozen shoulders, I had one once before.

  • Same here. Can you see someone about it? I've had physio but didn't help. It's been put down to using crutches!

  • I had physio for my last frozen shoulder but it didn't help. I saw my rheumatologist last week and I am supposed to start Etanercept but not sure when. I have put mt steroids up by 1mg, don't know if that will help.

  • Hope you don't have to wait too long. I've got Rituximab on Monday...first time. I've been having regular depo medrone steroid injections but not into joints. Takes the edge off

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