Tapering steroids from 12.5mg.

[Llanboidy]

I was diagnosed with PMR in August and my GP prescribed prednisolone 15mg for 3 weeks then 12.5mg for 2 weeks then 10mg and then arrange to see her. I had a day of increased stiffness and tiredness on the 4th day after lowering to 12.5mg. Also I'm aware that this is quicker than the BSR guidelines 2009, never mind the regime described in the 2013 Symposium review. I'm wondering about having a third week having 12.5mg and 10mg on alternate days and then going down to 10mg. Is this a good idea? Also, should I tell my GP I'm doing it or ask her if I should do it? I don't know how knowledgeable she is about PMR although she was quick to diagnose it. Does anyone have any experience like this?

[Shandon1]

I am reducing 1mg every 4 weeks. Now down to 9mg. It's going alright!

[Annodomini]

My GP took a blood test before reducing from 20 to 17.5mg. It seems that your GP hasn't bothered with this measure. Mine now leaves it to me to arrange a blood test and then see him a week later.

[Celtic PMRGCAuk volunteer]

Llanboidy, if the pain you experienced on the 4th day after lowering to 12.5mg resolved very quickly, then it just might have been due to steroid withdrawal. You were only diagnosed as recently at August, so certainly another reduction from 12.5 to 10mg is, I feel, much too soon. Also if you had raised blood test markers (ESR and CRP) at diagnosis then, as Annodomini has suggested, your blood tests should be repeated, especially if you are someone who had raised blood test markers at diagnosisis. Even if you are at present feeling well, they can still be a useful guide as to the state of the inflammation and whether or not it is advisable to reduce.

[Llanboidy in reply to Celtic]

Celtic, Annodomini & Dubliner1 Thank you for your advice. I think I'll see my GP and arrange another blood test. The one I had at diagnosis showed raised ESR at 58 and CRP at 28. I have had another blood test since but that was complicated by an infected tooth and I don't know the results. I'll stay on 12.5 while arranging an appointment so that will delay lowering it.

I think part of the problem is not knowing my GP and having the idea that she'll be difficult if I don't just go along with what she says. It's not a reflection on her as she coped quite well with me not taking alendronic acid.

Thank you. It's so good to be able to use this forum.

[PMRpro Ambassador]

This is quite a speedy reductions - the Bristol group would have kept you at 15mg for 6 weeks before reducing to 12.5mg and if you had still had any symptoms at 6 weeks you would have been on 15mg for a bit longer. Experience has shown that reducing by more than 10% of the current dose at any time is very often accompanied by a "flare" - but it is beginning to be considered that in fact it may be "steroid withdrawal" because the step-down was too big rather than a "flare" of the PMR.

A lot of people have been having great success with reductions using a very slow plan I developed when I couldn't get below 10mg without problems. It takes me 4 weeks to reduce from every day at one dose to every day at a dose only 1mg less. There are other similar plans around on the forums and one is being used by a consultant in the northeast with great success.

[Llanboidy in reply to PMRpro]

PMRpro thanks for your advice. I've written out your slow plan and am planning to use it when I go below 10mg. Maybe I should start using it sooner so as to keep the step down to 10%. Definitely need to develop a dialogue with my GP.

[PMRpro Ambassador in reply to Llanboidy]

Those of us who have been using this sort of plan are beginning to realise it does no harm to start far earlier. You reduce 1mg per month even at my very slow rate - 2mg per 2 months (obviously ) and that is far faster than trying 2.5mg, having problems and returning to your old dose. Even if you decide to stick it out and hope the pain will go away because it is steroid withdrawal - you spend a few weeks feeling rough and unable to do things and end up being totally miserable.

The 10% rule has been out there for several years - it is mentioned in rheumatology textbooks that I have read. But very few doctors seem to know about it. For many people the drops of 2.5mg are OK-ish at the higher doses, you'd hope that the 15mg dose knocked the inflammation on the head and that your "maintenance dose" is going to be well below 10mg so getting there fast seems to make sense. But PMR tends not to see sense!!

[iforget]

I tried a 2.5mg first drop and it was horrid so I was doing 1mg every six weeks ...but then I hit a big bump dropping from 7.5 to 7mg and had to go up back to 8 for a while. The rhuemy advised a "slowly does it" approach and on his instruction I am reducing VERY slowly at 0.5mg every 8 weeks and its going well...I am down to 6.5mg now

[jinasc]

As someone on another forum, pmrandgca.forumup.co.uk said...

"The tortoise won the race".