Flare: PMR, FIBRO, GCA I went down from 2mg Rayos... - PMRGCAuk

PMRGCAuk

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Dream21
Dream21

PMR, FIBRO, GCA

I went down from 2mg Rayos (Prednisone) to 1mg Rayos. Wow...burning pain in buttocks, painful stiff hips, mood swings, extreme fatigue. I went back up to 2mg Rayos. Everything has gotten better except for extreme fatigue. So frustrating...now I am back to chair yoga trying to improve energy again.

Sorry to complain. You do so well then “Bam!” a darn flare!

Can anyone relate?

10 Replies
oldestnewest

Yes, I can relate, after five years and down to 1mg. Early this morning I have very bad shoulder pain. I've taken 5mg this morning. It's a case of trying to catch a flare. Time will tell.

Why not try half a mg drop next time? You did a 50% drop going from 2mg to 1mg. That’s really hard on your body.

Dream21
Dream21 in reply to Mary63

PMRpro is correct. Rayos does not come in .5mg.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Further to Mary’s comment, you probably have dropped too much - but I think because Rayos is slow release it has a covering so therefore cannot be cut.

Are you following a slow taper plan - if not suggest you try next time around - see here for a few - healthunlocked.com/pmrgcauk...

But you do need to catch it quickly, hope you have - and remember the fatigue may be due to your adrenals glands not on top form yet - even after stopping Pred they can take a while to get back to normal. If that continues you might need to get them checked.

Ouch! I am sharing the fatigue with you. Not at all sure what triggered it. Back to the swooning journey towards bed for the past month. I must look up chair yoga.

PMRpro
PMRproAmbassador

Bear in mind you HALVED the dose of pred. I know it is difficult with Rayos/Lodotra because you have no 1/2mg options other than using plain pred in some way - and that is where a slow approach like DSNS can help. One day new dose, several days old dose, always getting the new dose days a bit closer together and extending it as required.

The fatigue is probably also due to a relatively big kick at adrenal function that is struggling to adjust.

But 2mg is a low low dose and doing only good not harm. I shan't be worrying if I get under 5mg!

Dream21
Dream21 in reply to PMRpro

Thank you. Great suggestion. I will try that next time. What does DSNS stand for?

PMRpro
PMRproAmbassador in reply to Dream21

Dead Slow and Nearly Stop:

healthunlocked.com/pmrgcauk...

pugrescue
pugrescue in reply to PMRpro

at the rate I am going, I may settle for anything under 20mgs LOL

Dream21
Dream21 in reply to pugrescue

I agree. However, I have been on Prednisone for almost 4 years, and Actemra about 21/2 years. All this medication makes me uneasy.

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