Reduction and flare

[Jennykk]

Hi, I have reduced from 15mg to 2 1/2 over the last 2 years. My last crp was 8 but thyroid looks like it's misbehaving now. Another check in September. Over the last month I have been having hip pain and been in denial! It's taken me so long to reduce... but now my shoulders are painful and when I stand up I can't move straight away. The old pain of turning over in bed is returning. I have now accepted this is the PMR and I need to increase my steroids. What should I increase to? I don't have a rheumatologist, just me and the GP... many thanks. Jenny

[TooSore]

Hi, I am also just two years into PMR and am at the same place. Started symptoms in April, diagnosed and started on 15mg in October 2015. Now down to 2mg and ready to start reducing again in a week or two. From my reading, this is not considered a long time so relax about that. I'm assuming that if your thyroid is acting up you are headed back to the doctor to straighten it out. I don't know anything about that but would think if it is not behaving properly it would affect the way the rest of your body is behaving. For now, it seems like you need more prednisone. I believe the usual recommendation is to go back to the dose you were comfortable on. Someone with more experience should come along to help. Also, remember to pamper yourself...rest and try not to stress about things.

[Jennykk in reply to TooSore]

Thank you! I will be going back to GP in September. Good luck with your reduction.

[PMRpro Ambassador]

At what dose did the symptoms start to reappear and what step-downs were you using? Can you remember - since you were in denial! Whatever that dose was, add 5mg and try that for a week. If that works you could then try going back down in 2.5mg steps - I'm assuming that you would go back to 7.5mg? Then drop to 5mg fairly quickly but only if your symptoms are back to usual. Then reassess.

These are really low doses - I know you are disappointed but you are better on 5mg and OK than 2.5mg and sore.

[Jennykk in reply to PMRpro]

Thank you. Keep hoping I won't need to but acceptance is nearly here! Increased dose to 4 today. X

[SheffieldJane]

I think the advice is to return to the last dose you were comfortable at. Sorry this has happened it must be gutting.

[Rugger]

I got down to 4mg and then started with pain in hips and shoulders which has been diagnosed as a bursitis flare of my PMR. I'd read here about increasing by 5mg and my GP said increase to 10mg, so I decided 9mg was a compromise and better psychologically! I'm staying at this dose for at least 2 months until I see the rheumatologist. The pains improved fairly quickly, but not 100%, so I've realised how stupid I was to be in denial and have learnt from this. I've realised I just need to listen to my own body!

[Jennykk in reply to Rugger]

Thank you. It's one thing knowing and a steep curve to doing! For me anyway. I've gone to 5mg and feel in a lot less pain. Fingers crossed.