Advice please: I was diagnosed in July, put on 15mg... - PMRGCAuk

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Advice please

jinoadby profile image
7 Replies

I was diagnosed in July, put on 15mg pred and have been reducing at 1mg per month. My main continuing problem is fatigue, but I have learnt what I can and cannot do and have tried to stick to it. However life went wrong over the last two weeks, and I was forced to push myself more that I should have done, and last week my neck, shoulders and hips became painful (although nowhere near as bad as when I was first diagnosed) and I don't even know if this would count as a flair. I am due to reduce to 9mg in about 3 weeks, but I decided to increase by a half mg for 4-5 days and to then try going back to 10mg. Things have eased somewhat. My hips are certainly less sore but my neck and shoulders are still bothering me. I am resting as much as I can, but I don't know whether to increase further or to keep going as planned. Any advice would be gratefully received.

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jinoadby
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7 Replies
PMRpro profile image
PMRproAmbassador

When life goes wrong - that stress is enough to cause a good going flare. I know from personal experience!I suspect your 1/2mg wasn't quite enough - try adding a few mg for a few days and see how you feel. That might clear it out properly and the 10mg will be enough - but don't be in denial if it isn't.

jinoadby profile image
jinoadby in reply to PMRpro

Thank you. I shall go up to 12 over the weekend and take it from there. If I'm still not happy I shall try to get hold of my GP, but I don't think she will be available until Wednesday. I feel a bit more relaxed now I know what to do.

jinasc profile image
jinasc

If I have read you right 8 months into PMR and down to 8mg, which is a fast reduction. Probably Christmas etc has not helped either. Best not to reduce at all when holidays come around.

I would go up to 10mg for 5 days, then reduce using DSNS or DL.s plans. Sometimes after a boost of 5 days, you can drop back to where you were................does not work for us all, we are all different.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

If suggestions do not improve your situation maybe have a read of this - advice on dealing with a flare - healthunlocked.com/pmrgcauk...

As mentioned by jinasc - slower taper for further use - healthunlocked.com/pmrgcauk...

jinoadby profile image
jinoadby in reply to DorsetLady

Thank you, that is so helpful. I have made a copy to give to my GP if I need to.

PuttyPenguin profile image
PuttyPenguin

From someone who constantly overdoes things, my rule of thumb is: if the pain is relieved with painkillers, then it's not a flair up so don't increase your pred. If it isn't relieved then call your rheumy nurse or, as many people say, go back to the level where you were comfortable. By calling your rheumy nurse helps to put them in the picture as well.

jinoadby profile image
jinoadby

Thank you, that is my rule of thumb also. At the moment my only port of call is my GP, but I plan to speak to her as soon as possible, probably next week sometime, which is why this site is so good. What would I have done on New Years Eve without your advice.

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