Tapering

[ithinkthisisstupid]

I am confused. Do I need to increase steroids until I have no pain before I can taper.

[DorsetLady PMRGCAuk volunteer]

Think we need a bit more information on your situation before we can comment…there’s nothing in your bio to say when you started steroids, at what dose and what dose you are on at the moment….and how you got there..

[ithinkthisisstupid in reply to DorsetLady]

Thankyou for replying. I have been on steroids for over 4 years and am currently on 13 mg but still have pain which reduces a bit during the day. Inflammation was 75 at my last blood test but consultant keeps telling me to reduce which I can't do without great discomfort.

[DorsetLady PMRGCAuk volunteer in reply to ithinkthisisstupid]

In that case then I would be concerned that inflammation was that high [unless that’s normal for you, or you’ve recently had an infection to make it that high] and the fact that you still have pain…. Is everyone sure you only have PMR?

[ithinkthisisstupid in reply to DorsetLady]

I do wonder. Thankyou for replying. Unfortunately the nurse at the hospital, my gp and my consultant all tell me different things!! I am speaking to my new gp soon (5 weeks wait for a telephone appointment) and see what he says!!

[DorsetLady PMRGCAuk volunteer in reply to ithinkthisisstupid]

Well new GP may be a good thing.. one never knows…Hope so

[ithinkthisisstupid in reply to DorsetLady]

It depends if they know about polymyalgia I think.

[DorsetLady PMRGCAuk volunteer in reply to ithinkthisisstupid]

But they might look at thigs differently - and be open-minded...fresh eyes, new broom - and all that!

[ithinkthisisstupid in reply to DorsetLady]

Thankyou. Worth a try

[PMRpro Ambassador]

More info needed really.

The level of pain relief you get with your starting dose of at least 15mg is a guide. If 15mg doesn't give a good 80% relief you need to try 20mg and possibly even 25mg. But more isn't usually needed and if 25mg doesn't get a good result then it very probably isn't PMR. Once you have achieved that relief, that is the guide as to what you look for later. You shouldn't feel worse at the end of a taper step than at the start.

However, some people are never entirely free of pain and as you reduce the dose to lower levels, other things may reappear that were masked by the higher doses of pred. It is important to learn to distinguish between the PMR-related pains and others such as injuries or osteoarthritis. Don't assume everything is PMR.

[ithinkthisisstupid in reply to PMRpro]

This is so helpful. Thankyou. However I can't distinguish between polymyalgia pain and something else. Although my inflammation levels are 75 my consultant insusts in his letters that I am pain free. I don't think he listens to me!

[DorsetLady PMRGCAuk volunteer in reply to ithinkthisisstupid]

Listen to you? That’s a novel concept….and a recurring theme on here unfortunately.

[ithinkthisisstupid in reply to DorsetLady]

I am quite sure I told him I was in pain as I tell everyone who will listen. He is only at the NHS one day a week (otherwise private)and takes so many weeks to write the letter I think he has forgotten! He is not a popular consultant either but I was told by a locum gp that you cannot choose your consultant on the NHS.

[DorsetLady PMRGCAuk volunteer in reply to ithinkthisisstupid]

but I was told by a locum gp that you cannot choose your consultant on the NHS.

Not sure that’s strictly true - but it’s certainly difficult…

[piglette in reply to ithinkthisisstupid]

This is what the NHS says about choosing your own consultant. Theoretically you can. nhs.uk/using-the-nhs/about-...

[ithinkthisisstupid in reply to piglette]

Gosh thankyou. Must study this

[PMRpro Ambassador in reply to ithinkthisisstupid]

See your GP and make it abundantly clear that you ARE in pain and you feel the relationship with the consultant is, at best, poor.

[Boss302Fan in reply to PMRpro]

I know 80 mg taken when pain is 10/10 will send PMR pain to 0/10 in less than an hour!😂 Post tapering isn’t fun though.🤔 Plus feeling like you’re revving, like bound up energy.

[123-go]

Hi there. If you believe that something in your written record isn’t accurate you can ask for it to be amended. I have, in the past, asked for my own records to be corrected and did this by writing to the nurse specialist in the rheumatology department and sending a copy of the letter to my GP. There is a vast discrepancy between being pain-free and in pain.

[ithinkthisisstupid in reply to 123-go]

Thankyou