Reducing medication

[Rrnijmv]

Hi i'm very new to this site only digonosed with gca in January 2021 I have had pmr from 2019. I have been sitting here wondering what is the best way to start to reduce my steroids I was on 50mg for 4 weeks and then went down to 40 for 3 weeks. I'm on week 2 of that. My rheumatologist then has suggested 10mg to be reduced every 2 weeks to reach 20mg. Then reduce 2.5 mg every 4 weeks down to 10mg after that 1mg monthly. Does this seem ok I was just after a bit of advice.

[fmkkm]

Welcome Rrnijmv,Sounds like your Doc thinks this is something that lasts 1-2 years. I truly hope that is true for you, but for most it is double that and more. If you taper too fast you will find out because the inflammation will build up and overflow. Not saying his taper won’t work, but you will know if it doesn’t.

Wishing you a safe journey. fm

[Rrnijmv in reply to fmkkm]

Hi I'm going to take it one day at a time and be driven by the symptoms not the lack of them thanks for the reply

[DorsetLady PMRGCAuk volunteer]

Just for info this was mine down to 15mg - sight loss so hence long time on 60mg

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

But each reduction was after discussion with GP, provided both I felt okay and blood tests were okay.

Reductions every 2 weeks may be a bit optimistic- but you won’t know until you try.

Under 20mg may also be from the guidelines, but it’s not always achievable....you need to led by your illness and symptoms (or rather lack of them) not necessarily the calendar.

[Rrnijmv in reply to DorsetLady]

Thank you for replying I think I'll do what you said go by the symptoms not the lack of them and take my time one day at a time thanks

[TGerard]

Your timeline sounds very similar to mine: PMR diagnosed November 2018; GCA January 2020. It may therefore be helpful to list my pred doses after GCA diagnosis. I was given clear instruction by Royal Free rheumy:

60mg - 2 weeks

40mg - 2 weeks

20mg - 6 weeks

17.5mg - 4 weeks

15mg - 4 weeks

12.5mg - 4 weeks

10mg - 4 weeks

9mg - 4 weeks

8mg - lasted just over 3 weeks before getting OK from rheumy (after consulting wise heads on this forum) to go back up a bit because of a flare. Thought going up 5 would be OK but was told I could go to 15 again. That worked well. With hindsight and careful study of the notes I keep about how things are going, the first signs of possible trouble occurred around 15mg on the taper. So the reductions below 20 were probably a bit quick for me. Listening to the body is key as you go down - a bit of discomfort can be expected after a drop but if it gets very uncomfortable then something needs to be done.

Now down to 9mg again and all well so far.............. I'm now stretching the time at each dose to 6 to 8 weeks in the hope that will do the job.

I hope all goes well for you.