Tapering Pred

[Angex05]

Hi,

I'm still very new to all of this so am after some advice please. My doctor wanted me to drop down from 20-15mg last week. After being on this forum I know that is not a good move so I reduced to 17.5 instead and "touch wood" it seems to be working. I want to get off these meds as soon as I possibly can, like everyone on here. When is it advisable to drop again? I have no pain or stiffness at the moment. I'm not due to see the doctor again until the end of this month. I don't want to wait until then to drop again.

Thanks

Ange

[Celtic PMRGCAuk volunteer]

Ange, it's good to hear that your first reduction from 20 to 17.5 is proving successful, and long may that continue.

You would be wise to remain on 17.5 for at least 4 weeks before considering a further reduction, depending on your symptoms at that time, together with the results of repeat blood tests if you are someone who had raised markers at diagnosis.

It is important to be aware that the steroids haven't cured anything - sadly nothing does at the moment - they are just damping down the inflammation that causes the pain. It isn't good to continue with the mind set that you "want to get off these meds as soon as I possibly can" because PMR will go into remission when it wants to and not, unfortunately, when we or our medics want it to, and that can take anything from two years upwards.....18 months if you are very lucky.

You have been very lucky thus far in that you have responded so well to your starting dose and your first reduction. Best not to spoil that by rushing further reductions, as that risks the inflammation 'getting away' necessitating the need to increase the dose back up, therefore taking even longer to reach remission. Think tortoise, not hare!

[DorsetLady PMRGCAuk volunteer]

Good advice from Celtic. The way forward is SLOWLY, SLOWLY! Many of us have learnt the hard way - usually doing as the GP told us before we had enough knowledge of our own. You have to forget about rushing things - it takes as long as it takes! Whether we, or the doctors, like it!

[PMRpro Ambassador]

Celtic and DL have given you good advice - but we can't emphasise enough that you cannot work on "I want to get off these things as soon as possible"

Pred is the only thing between you and being back where you were pre-pred. Reduce too fast or to too low a dose and you will end up with a flare that will send you back to 20mg more than likely. No-one wants to be on pred - but one day you come to realise it is your friend and allowing you a better, almost normal quality of life. Don't waste energy fighting PMR - it only causes more trouble in the end.

[HeronNS]

I second all those comments. Want to add that I have learned (the hard way, like everyone else, I think!) that one of the ways forward to getting better is to learn how to rest. If you are feeling great you will want to do everything you did before you were ill, plus try to catch up on all the stuff you might have put off. Don't do it! If you had a broken limb no one would be expecting you to be very active. Just because your disease is invisible doesn't mean that you don't have a serious autoimmune disorder that is being treated with a potentially dangerous medication. First order of business: look after yourself, use your resources wisely, keep your energy for things that help you get better - gentle exercise, for example, not painting the house or clipping hedges! Or even planning and preparing celebratory family dinners. Get everyone to chip in and help, or go out somewhere. Whatever you do, find a way to conserve your energy for what really matters. The body needs time and resources with which to heal.