Some advice please pmrpro and others re reduction of pred

I was diagnosed with pmr end of November - stared on 20 mg pred. Had almost immediate effect. Reduced to 15mg after 4 weeks and to 12.5 by Feb . No real issues with this. Reduced to 10 mg 3 weeks ago in time for my Rheumatologist appointment on March 13th. Hospital rang on the day to cancel and sent me my next appointment for September!!

I have stuck with 10 despite having all horrid pains back- i could not move last weekend. Put myself back onto 12.5mg for a few days and today have reduced to 10mg.

Am seeing GP next week - first appointment I could get- but sadly he doesn't understand this condition- who does?

Can anyone advise on what level of reduction I should be looking at between now and September? Is it 1mg monthly or 0.5 mg monthly? Is it all about how my system copes?

I feel I need to know more before the GP visit.

Thanks in advance for your answers- I read this site almost daily and everyone is so kind and knowledgable

9 Replies

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  • I have been told that reducing half a mg a month when under 10mg works well, although I know some people go for 1mg a month. The important thing is to take it slowly and stop reducing if you have problems. Don't let the inflammation take over. I organise a blood test every three months to see everything looks good.

    If you had pains at 10mg increasing was a good idea to get the inflammation under control. Trying to tough it out is a no no and a total waste of time, as well as being painful.

  • Thank you piglette!

  • Hello Jude62

    All I can say is 'watch and wait' for some expert replies here, and a wealth of expertise and experience from other PMR sufferers. Here's my best shot at an answer:

    The course of PMR, together with the steroid-tapering process to manage its symptoms, is far from an exact science either way - but you are in good and expert company here.

    As for your GP's expertise (or possible lack of?) - my suggestion is that you go to him / her armed with some reliable facts / info about both PMR and steroid management, just in case they are 'behind the curve'.

    As for steroid tapering / reduction plans, the Golden Rule is not to reduce by more than 10% of the previous periodic (monthly, or longer), level dosage at any one time. And, as many here will tell you, Symptoms Rule: i.e. don't stick doggedly to a reduction 'plan' that doesn't keep the symptoms under control and give you some reasonable quality of life in the meantime.

    The DSNS (Dead Slow, Nearly Stop) method is well respected and proven: and if you feel like doing some number-crunching, my equivalent Escalator method might be worth a look. Either method makes the tapering process less of a periodic step-down and more of a continuous, graduated process for reducing the Preds - and can reduce the risks of the withdrawal symptoms that go with too-fast and / or too great a reduction percentage-wise at any stage.

    There are also many factors that can de-rail even the best of tapering plans - over-exertion, other ailments and Stress to name a few. This is where all of us need to learn to 'pace' ourselves with PMR.

    The bottom line for you (as for many of us!)? PMR is a set of quite serious symptoms of a nasty and debilitating auto-immune illness. It's a real physiological and emotional challenge to deal with - but also a learning curve. Try to immerse yourself in the vast resource of knowledge, expertise and support here, and it will at least give you some feeling of control and confidence on the Journey.

    Hope this helps! Try to keep smiling in the meantime - we also have a lot of fun here in between the more serious stuff! ;-)

    MB :-)

  • Must be Friday!

  • Yep! :-)

  • Thank you - so encouraging and sensible-

  • Hello Jude 62, I have been on 10mgs for some months and have been using the DSNS method to reach 9...I'm ok so far... touching wood and, if I get there without any hiccups, I will stick at 9 for a while and then continue to taper using the DSNS by .5 (hopefully). I'm in no rush as you can see... better safe than sorry!

  • Instead of dropping from 12.5mg to 10mg in one go - try 1mg at a time. If the pain comes back it could either be PMR flaring OR steroid withdrawal at that level of reduction. If you have pain at 10mg - it isn't time to think of ANY reduction plan aiming for September.

  • Hi, As a PMR sufferer for over two years, I have to agree with markbenjamin. It took me almost six months to reduce from 10 to 9mg, so, no matter what plan I may have had, it most likely wouldn't have worked.

    My motto has been to stay at a level you are comfortable with (that is with minimal pain) before you even contemplate tapering down. On average, I have stayed at that level for some four weeks, and after 10 mg, I have only dropped by a half mg steps.

    If you taper too quickly, or by too much ( more than ten per cent of your current dose), then the PMR is very likely to come back and bite!

    My advice is to listen to your body, and to work out what seems best for you.

    Good luck.

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