Update

[pastamaid]

So started off with bloods showing CRP39 and ESR 68.Went onto 15mg of prednisalone and got immediate effect with tablets.

I must say, i was not affected as much as some on here, just achy legs, shoulders, hips and neck, but didnt stop me doing anything. Just got fed up with the stiffness.

Have cut down from 15mg to 12.5 to 10mg., with no problem and no pain coming back. Feeling good.

Went to have another blood test and CRP came back at 2 and ESR 15, so doctor said I should cut radically for 3 weeks on 7.5 and then straight to 5mg.

I have checked all the advice on here before I went and I said I thought that was too fast. He said why dont we try and see what happens! I am concerned that he is talking rubbish. He said if we can get you down to 5mg, weight will drop off, sleep problems will be cured and mood swings will be better. So he really tried to sell it.

I dont know what to do and trust the advice on here, what do you think?

Thanks for any advice as usual.

[DorsetLady PMRGCAuk volunteer]

He is talking rubbish… and is obviously not au fait with PMR….. it might work with acute diseases, but not yours.

The bloods are good because the inflammation is being controlled by the Pred … drop the dose, and it’s likely to built back up.. and surprise, surprise your marker's will rise again.

Guidelines state once below 10mg, reductions should be 1mg a time - between every 4 to 8 weeks depending an disease activity and/or patients wishes…

Nowhere does it say drop 2.5mg every 3 weeks.

He may be correct in the weight loss and sleep, but you’re likely to be in agony.

[PMRpro Ambassador]

No, no, no. 1mg at a time from now - because while your markers look lovely at present, that is purely because you are still on enough pred to keep them there. It doesn't mean that you can rush down the rest of the taper and they will stay there! 1mg can be the difference - and it could be 9mg is what you need at present.

As for weight will disappear at 5mg - it might, or it might not, some people have to get off pred before it happens but if you cut carbs drastically you can almost always lose weight at any dose. Mood swings are as likely to be due to PMR as to the pred - honestly! I gained weight with PMR, the mood swings were unreal and I couldn't sleep. I lost 35lbs while still on 10-15mg pred - it will go if you work at it.

[pastamaid in reply to PMRpro]

Thank you. I havent gained any weight at all yet. It's a shame doctors are not educated in this disease and if they aren't, why we are not referred to specialists who are. I will listen to the people who know what they are talking about. So thank you again for the advice. I will send a message to surgery to say i need to either go to 9 or speak to him again

[PMRpro Ambassador in reply to pastamaid]

"I havent gained any weight at all yet"

So what is he on about!!!! Honestly - sometimes I wonder what world they live in!

[pastamaid in reply to PMRpro]

He just thinks that I may and wants me at lowest quickest. I didnt even tell you the first thing he said when i sat down. He said your bloods are down are you still taking the pred? Ridiculous. Wish they would just let us use the people who know what they are talking about and stop trying to act like they know!! Thank you again. I am sticking with the dead slow stop regime and im happy with that

[PMRpro Ambassador in reply to pastamaid]

But lowest isn't the entire aim - it is lowest EFFECTIVE dose and the don't seem to get what that means do they? Or how to find it.

[piglette]

If he thinks you have a weight problem your doctor should not be reducing your steroids to solve it, that is diabolical. Can you ask for a second opinion? You could just reduce 1mg and see how you feel after a couple of weeks. If OK after four weeks you can cut again. When do you have another appointment? Can you just reduce slowly and see how it goes?

[PMRpro Ambassador]

Or even retiring ...