First post on here. I have been diagnosed with PMR after waking one morning and hardly being able to get out bed due to severe hip and shoulder pain. I had been suffering various joint pain for years, I'm 58, and was told it was most probably fibromyalgia? I thought that was bad but PMR is a whole new realm of pain.

Started on 20mg day of Prednisolone which unfortunately did not do anything. Ended up on 40mg day and within 7hrs was almost back to normal, in fact better than I had been for years. I have been trying to reduce over the last month or so and got to 20mg but the pain has returned, albeit not to the same level. Now going for more blood test as inflammation marker was 60+ before starting on 40mg but down to 5 after.

Good grief getting the munchies is an understatement and I constantly want to snack.

Obviously as many others I am not keen on being on a high dose of steroids but almost bed bound without and quality of life being crap. Also taking Alendronic acid and not keen on this either.

Just downloaded Kate Gilbert's PMR survival guide on kindle and seems an interesting read.

Off to get more bloods tomorrow and expect to have to raise prednisolone 30mg.

Not sure what else I can do?

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4 Replies

  • Hello and welcome to you! If you have a look round the PMRGCAuk website, you will find all kinds of information and tips.

    Generally suggested are gentle exercise, watching carb intake (as you have discovered, steroids can make some people feel incredibly hungry) and perhaps adding anti-inflammatory food to your diet. Also as you have found, some are very sensitive to steroid reductions and there are more tips about that, plus various very slow reduction plans which have proved successful.

    Also suggest you do a bit of research on Alendronic Acid. There have been some recent developments which your doctor/consultant might not be aware of.

    On the front page there is also a link to another forum which may help you.

    Good luck on your journey!

  • Thanks polkadotcom, I am not starting to look more at my diet. Hip and shoulder pain is bugging me at 20mg I know I need to up the dies but I am reluctant. Think I will wait and see what levels my inflammatory marker is at, hopefully get this late Monday, and then speak to my GP about whist increase to. Although that foes leave me with the weekend of pain and discomfort.

  • Ha ha' just read my post again, that should have said now looking at my diet instead of not looking!

  • HI I am new here to and have found it most helpful.I have just been diagnosed like you.Dr is trying to reduce my steroid am at 10 at the moment,getting pain and stiffness and gosh the fatigue is horrendous. I am 57 years old,its amazing theyounger people who have pmr,as they say its older people who get it.

    Yes as you say the pain is awful,but it does help reading other peoples stories and that we are not alone.

    Take care

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