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[Movies5178]

hi just sum advice was on 15mg steroids iam now down to 1mg pain in muscle first thing in morning as day goes on get better is there any pain medication I can take to help with pain or is it going to be like this all time

[SheffieldJane]

pain -killers don’t tend to work on PMR. There is no point in under-treating yourself with Pred. the inflammation will just build up again. I would return to the last dose you were comfortable at and when the symptoms settle, do a very slow taper of half a mg. See FAQs for tapering guidance. Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi

You don’t give any indication on how long you have been on Pred - but would say that you have reduced too quickly and from what you say your illness ( guessing it’s PMR ) is still active.

But a bit more information would help…and a more meaningful title would have given you related posts….. and no, it shouldn’t be like this all the time.

Without more info would suggest you go back up to around 4 or 5mg - and then use a slower taper as suggested - some here -

healthunlocked.com/pmrgcauk...

you are not reducing relentlessly to zero - you are trying to find lowest dose to control your illness - and have obviously gone below that. If you haven’t read this it might be useful - albeit it that you aren’t that new to illness -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The pain relief for PMR is the correct dose of pred. Ordinary painkillers don't really help and there is no point beng on too little pred, leftover inflammation will just build up over time until you feel as bad as you did at the start and you may have to go to a higher dose to get it under control again.

Please don't use your username as a title of a question - say something indicating what it is about, your name will appear automatically.

[Movies5178]

hi I have been remission for PMR for two weeks now I am feeling lethargic no energy I had blood tests done I am low in iron B12 doctor going to ring me tomorrow hopefully can sort this out can doctor give any medication to help with this

[DorsetLady PMRGCAuk volunteer in reply to Movies5178]

How do you know you’ve been in remission for 2 weeks?

Would say your feelings of lethargy could well be down to adrenals struggling as well low in B12, but as there is very little in your profile it’s a bit difficult to give advice.

In UK, tablets are usually given for low B12 initially, and sometimes regular infusions depends on cause.. but do you eat a good diet?

[PMRpro Ambassador in reply to Movies5178]

If you really want replies then I suggest you post a new thread - only I, DorsetLady and the author of the thread will see your question here.

For a start, it takes up to a year after stopping pred before your adrenal function is fully back to normal so you are likely to feel fatigued for a while. It also depends on the last step you took in your taper - after 2 weeks it is a bit soon to be confident your PMR is fully in remission. Even as little at 1/2mg a day is plenty to keep the inflammation due to very low activity PMR under control but at zero pred it can mount up slowly - like a dripping tap fills a bucket eventually and it overflows - and can cause symptoms after some months.

Regarding the low B12, they can give you supplements, if it is due to poor absorption they can use injections to bring the blood level up. They may do some investigations to identify why you are low on B12, it may be due to dietary lack, it can be a sign of an autoimmune condition called pernicious anaemia,