ariel1973 in reply to DorsetLady7 years ago

Thank you DorsetLady. That is good to hear. I will do that from tomorrow. I thought it was odd to come back after such a good response.

PMRproAmbassador in reply to ariel19737 years ago

The recommended dosing is all at once in the morning, preferably with food. DL has explained the reasoning so I won't write any more.

But I will ask - have you gone back to normal activities because you feel better? Whatever many doctors will try to tell you - no you are NOT back to 100% normal once you are on pred. If only!!!!

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Shastring in reply to DorsetLady7 years ago

Hi,  DorsetLady is correct, I wake every day at five am, take my full dose because when I originally took one in am and other pm it didn't work. I have a lite snack, piece of toast and jam and I'm fine. Good luck

piglette in reply to ariel19737 years ago

I think the important thing is to realise that PMR is life changing and you will  need to adjust your day and even your diet to cope with it. The pred reduces the pain but that is all, you still have PMR which is very intolerant and will come and bite you if you are not careful. My rheumie gave me the impression that I would take the steroids and within a week I would be running circuits as if nothing had happened. This is absolute tosh.

DorsetLadyPMRGCAuk volunteer in reply to ariel19737 years ago

I should say - you've done a lot too much ! As others have said, you need to learn to take things easy. You have a serious illness that needs to be managed.  You have to take the Pred, but also take care of yourself by pacing yourself, not doing too much just because you feel better, and getting plenty of rest. This illness is life-changing, and the sooner you can come to terms with that the easier your life will become. Don't worry - we all do it! But we all get wiser as we get older. Take care. 

PMRproAmbassador in reply to ariel19737 years ago

Ah ha!!!!! I'm really NOT surprised you still hurt!

Piglette and DL have said it all...

ariel1973 in reply to Nurseblossom717 years ago

I had a slight elevation to ESR last year and now it lies just within top of range. Nothing on CRP last year. 

I have slightly elevated platelets and history of papillodema of optic nerve 12 years ago which was attributed to isolated diastolic hypertension, but it confused the hypertension and opthalmology specialists. I wonder now if could have been temporal arteritis?

I had severe pain after accident in 2011, seemed to improve with a gentle and flexible job. Then was moved into new job with lots of driving which led to worsening problems with pain in major muscles, variable though.... have persued thyroid explanation, as exhaustion and brain fog last year. 

I have taken iron for low ferritin and now the iron is too high (? worsened inflammation). The endo seeing me for all that decided to try pred, saying 'if this works, suggests it is PMR'. 

I am just desperate to feel better and feeling a bit more optimistic now.

PMRproAmbassador in reply to ariel19737 years ago

Is the iron high or the ferritin? Raised ferritin is the same as ESR/CRP - a sign of inflammation. 

We're all desperate to feel better - but we have our own role to play in managing PMR. It really is very important to manage activities to get the best out of the pred. 

Have a read of this:

butyoudontlooksick.com/arti...

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ariel1973 in reply to PMRpro7 years ago

Just the iron labs. Ferritin could go up further and still be fine. Also the pain predated the iron going high from supplements, so unlikely an indicator of inflammation, for me, I guess.

I think because I have been hitting a brick wall for so long, being told it was all in my head or I just have to put up etc... just to have a little hope for a week of freedom.... was just too enticing. 

There is so much that has fallen by the wayside this last 2 years....

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