Stuck

[bBarnabus]

I have been on 24 mgs deflazacort (and up to 40gs) for 3 months because of a flare. I am trying to reduce by 10 percent per fortnight but I don't seem to be making any headway: Lower back, groin, knee, shoulder pain and fatigue. I was diagnosed in August 2018 and from 15mgs I reduced with very few symptoms to 3mgs over 8 months. Since then things have got worse intermittently unto now I seem to be stuck with these symptoms.

Should I worry about being stuck on such a high level of steroids? I can't get any good medical advice here and now in rural andalucia. I go for an half hour walk every day and do afew jobs around the house some yoga generally though too tired to do much else. Thoughts please!!

[PMRpro Ambassador]

10% every 2 weeks is a lot - but is your diagnosis PMR? How certain is it? Deflazocort was thought by an Italian study in the 90s to be a good option for PMR but 40mg is nearly 30mg of pred, a high dose for PMR. The 24mg deflazacort you are on now would be regarded as a starting dose.

You say things have got worse intermittently? Do you mean the symptoms worsen and get better over time? I wonder if what is bothering you is actually myofascial pain syndrome which is often found alongside PMR as well as in its own right but doesn't really respond as well to oral pred. I can hardly move this morning for low back pain due to MPS - it happens every so often, a muscle goes into spasm. Usually because I did something I shouldn't have like lifting or stretching. Once it becomes chronic the pain doesn't really go away without targeted treatment with local injections or manual mobilisation techniques.

spineuniverse.com/condition....

You may find exercises on the internetthat would stretch the muscles involved

[bBarnabus in reply to PMRpro]

Thanks for your reply. Do you think that if it has is myofacial pain syndrome I could drop my steroid dose quicker without it altering thepain?

[PMRpro Ambassador in reply to bBarnabus]

It might do - but I do find it helps a bit except when it is a really "witches shot" as the Germans call it!!! All you can do is try.

[bBarnabus]

Sorry for any. confusion I was down to 3mgs two years ago but am now on 24 mgs deflazacourt to cover increased pain

[SheffieldJane in reply to bBarnabus]

I have deleted my useless reply. Sorry for compounding the dilemma. I still think your exercise regime is exemplary and that it sounds pleasant. I do not know anything about Deflazacort and how it behaves with our conditions. Good luck!

[PMRpro Ambassador]

I understood him to mean he is on 24mg deflazocort - equal to 20mg pred.