newly diagnosed, need advice on steroid reduction planning.

[peggy1920]

how slow can I go? The overstretched GP wants me to try to reduce from 15mg a day to 12.5. Functioning just about ok on 15. I need a reduction plan…. I am on my third three week prescription. Suggestions welcome!

[PMRpro Ambassador]

So you have been on 15mg for just over 6 weeks? You do need to consider tapering the dose but they can't just dump you on a 3-weekly prescription, they need to provide 5mg and 1mg pred tablets at the very least for a couple of months so you can go about it more gently. Most people can manage 15 to 12.5mg but some don't and you have to be able to adjust if necessary.

Look in the FAQs under Tapering to get explanations and options for reducing the dose.

healthunlocked.com/pmrgcauk...

Reading between the lines - you don't sound as if you are doing really well at present - have you adjusted your daily living to cope with PMR? Pred isn't a licence to go back to your previous lifestyle and levels of activity - it is to manage the pain and other symptoms in a chronic condition which itself is not affected by the pred - it carries on just as it was before and lifestyle changes really are very important.

[peggy1920 in reply to PMRpro]

thank you, yes it’s early days and complicated by diabetes, grief and Christmas! I figured diet and exercise the things I can control and was getting to grips with a working routine then Christmas happened. I have been given enough 15mg for a month plus 28 12.5 mg to add to reduction mix. I understand there is a “dead slow, nearly stop” reduction programme which sounds about right just now, but I would like to consider some other options

[PMRpro Ambassador in reply to peggy1920]

All under tapering in the FAQs

[peggy1920 in reply to PMRpro]

really helpful, many thanks

[DorsetLady PMRGCAuk volunteer]

15-12.5mg is in the BSR Guidelines, but that doesn’t mean everyone can achieve it…1mg a time is probably better, but as. PMRpro says you need to adjust your life to accommodate PMR

Maybe have a read of this, and also request smaller doses of steroids…..

healthunlocked.com/pmrgcauk...

[peggy1920 in reply to DorsetLady]

very useful food for thought. Thank you

[TheMoaningViolet]

Hi peggy1920, I reduced from 15 mg to 12.5 mg (I wish I knew about 2.5 mg tablets then, my cutting was terrible), and it was difficult, but I managed it. I was on 15 mg for 3 weeks, 12.5 mg for 3 weeks and 10 mg for 4 weeks. This is, as DL says, fairly standard protocol. I was immediately great on 10 mg, so even though the first reduction was challenging at the time, it worked. It's worth noting that I always felt really well on the dose I was on before I started reducing.

[Jigsawlass]

I, too, went from 15 to 12.5 . I found 12.5 to 10 too much so my consultant suggested 12.5 to 11 and then a reduction of 1mg a month . That worked fine until I tried to go from 6 to 5 . I am now on 5.5mg , early days, but all good so far. I will be sticking to reductions of 0.5mg going forward . It's all about tweaking . I completely agree with PMR about the lifestyle change , ordinary life can't continue and resting lots is key !

[MiloCollie in reply to Jigsawlass]

I did that too in the early days and was ok.

[piglette]

I did manage 15mg to 12.5mg OK, although after that I slowed down a lot and went to 0.5mg under 10mg.

[MiloCollie]

I think 12.5 will be ok for you then after a month reevaluate.

[peggy1920 in reply to MiloCollie]

good to have everyone’s input, thank you for the reassurance / sense of what to expect going forward.

[Flivoless]

As you say that your are only "just about" functioning on 15mg, it suggests to me that now is not yet the time to consider any reduction.

[Rugger]

I stayed on 15mg for 8 weeks; 13mg for 4 weeks; 12mg for 5 weeks; 11mg for 2 weeks; 10mg for 8 weeks; 9mg for 5 weeks then started the Dead Slow Nearly Stop taper..... It depends very much on how we feel at each stage. Best wishes.