73 year old women with PMR

[Daisy1923]

I have been diagnosed with PMR over a year ago. The dr put me on prednisone but suggested I see a rheumatologist. I did see one and he said continue the prednisone. I was put on 10mg the first month 5mg in am and 5 in Pm. I am now weened off the prednisone. Was told to reduce the dose 1 mg per month. I don’t feel very well have pain all over my body. I took 3mg of prednisone last night so that I can get some relief. Slept better. I think I will call my dr and tell him I need at least 3mg of prednisone to get thru the day. What do you think?

[Ana-16]

Definitely contact your gp and explain what’s happening. I’m sure the experts here will agree and add their invaluable advice

[DorsetLady PMRGCAuk volunteer]

Too fast a reduction, very few people manage to get off Pred that quickly - PMR can last anything between 2 to 6 years

Would say you probably need 5mg per day, but you may get away with 3mg.

Whatever dose you restart, do not reduce 1mg monthly come what may -below 10mg recommendation is 1mg every 4-8 weeks - whether you do 1mg every 2 months or 0.5mg a months is personal choice.

Just as a matter of interest did you initially get full relief on 10mg? Usual starting dose is 15mg.

[HeronNS]

Your treatment regimen has been a bit different from what most of us would receive. I note your dose was split into two from the very beginning. Did relief from the PMR symptoms last all day? And your rapid if not complete relief from 3 mg seems to show you really do need to stay on pred for longer. At lower levels the side effects doctors are so afraid of are usually not an issue at all. I've been on pred since mid 2015, most of that time after initial taper at levels around 2-2.5 mg!

[piglette]

It does sound like your doctor does not have much of a clue about PMR or steroids. The initial recommended dose is between 12.5mg to 25mg. It is considered a long term disease and will normally last a couple of years if not longer. Have they offered you any blood tests?

[PMRpro Ambassador]

You seem to have been managed very strangely! Normally you would start with 15mg taken as a single dose in the morning - you need enough to get the inflammation under control. Then you slowly reduce the dose in small steps to find the lowest effective dose - and that may not be zero straight off! PMR lasts more than 2 years for the majority of patients.

If you were good at 3mg with no pain or other symptoms then that probably is where you need to be - but I also think 5mg is the place to start and then reduce 1/2mg at a time to find your ideal dose. One of the big names in the world of PMR and GCA says he often keeps patients at 2-3mg longer term because it reduces the risk of relapses. I think it is better to keep tapering the dose very slowly and in very small steps because you often can get lower and even off pred. But you can't do it quickly - you have to be patient.

[Louisa1840]

I think one of the things we PMR people need to learn is that WE are the best advocate for our bodies! I am not knocking the medical profession and in fact my GP diagnosed PMR as soon as I walked (read hobbled) in to her surgery nearly five years ago. But really I now manage myself just asking for new scripts as I need them. My own self awareness and the wonderful support from all the knowledgeable people on this site are all I need though I would be quick to seek medical help if I felt I needed it. All the best Daisy!

[Daisy1923 in reply to Louisa1840]

Thank You so very much for your response. I will contact my dr today and ask to continue on the prednisone. I think 3mg per day will help the pain. I will keep you all posted.

[9lives]

Yes I’m same as you , diagnosed immediately 2016 and then I just sort myself out. Occasionally get a check over bloods etc . But we are the best advocates of our bodies xx