Reducing too fast / too slowly?

[DebbieF1603]

Hi all,

Apologies that this has been covered many times before but can I just run my own personal situation past you please.

I started on 20mg Pred, dropping to 17.5 after 5 weeks and with the first week alternate days 20/17.5. I am now on my second reduction to 15mg by the same method.

My GP says she doesn't need to see me until I'm at about 5mg unless I have an issue.

I'm a fairly 'lucky' case so far in that I only have discomfort now (hips, pelvis), not pain, I can exercise (other than running) and side-effects aren't too bad.

Long background. Question - next time around could I try another 2.5 drop and the same until I'm at 10mg, then 1mg at a time or is that too much? Or do I just try it and see?

I'm a few weeks away from the next adjustment yet but like to be positive.

Thank you!

[Mrsd12f]

Hi Debbie,

I'm no expert, so can only speak from my own experience. I was started on 15mg (in November 2015) for six weeks, dropping to 12.5. That drop was fine. After a further six weeks, I tried dropping to 10, but found that too much, so went back up to 11/11.5 and then down to 10. By August 2016, I had got down to 8-7.5, but then hurt my back and had a flare, which resulted in going back up.

Since then, I've had another attempt to get below 8, but found I was flaring again. Currently, giving it another go, using DSNS and hoping to get down to 7 by the end of the summer, but not pushing it.

As you started on 20mg, which, as I understand it, is a fairly high starting dose for PMR, I should think you'd probably be ok dropping to 12.5, but bear in mind that it can get more difficult after that, so smaller reductions are going to be better, especially once you're down to 10mg.

I'm sure DL and PMRpro will be along, shortly, to give you their much more valuable experience, but just thought I'd let you know what happened to me whilst tapering down to 10mg.

Good luck!

[DebbieF1603 in reply to Mrsd12f]

Thank you! Very helpful.

[DorsetLady PMRGCAuk volunteer]

Hi,

The pace of reductions really depend on individual, and the plan you suggest is certainly one recommended by many papers/Rheumies. Unfortunately it doesn't work for everyone - many find it okay until they get to 12.5mg, or even 15mg in some cases. Those people usually drop by only 1mg at a time.

A good thing to keep in mind is the advice that you shouldn't drop more than 10% of your existing dose. So at 20mg is okay to drop 2mg or 2.5mg - depending on what pills you have - but obviously as you get lower in dose then 2.5mg is certainly higher than the 10% recommended.

Once you get into single figures it can become more difficult to reduce so many only drop 0.5mg a time.

Sometimes you just have to try and see what works for you. Just remember not to try and reduce if you have a return of your original symptoms, and to give your body time to adjust to each reduction.

What you have to remember is, your original dose is more than you need on a daily basis, but it is given to get control of the inflammation already built up pre diagnosis. You then reduce in a timely manner to find the actual dose your body needs daily to keep that inflammation under control. Go too quickly or take too big a step and you may go below that level.

[DebbieF1603]

Sound advice DL, as always. Thank you.

[PMRpro Ambassador]

You can try 2.5mg at a time - providing "your dose" is below 10mg it won't be a problem unless you are too sensitive to the change in dose. But you only find out by trying. If 2.5mg results in immediate pain and discomfort it is probably simply now too much at one go - go back to the last dose, get stable and then try 1mg at a time, 1mg every 2 weeks is still 2mg over 4 weeks and often works better than 2.5mg at a time. If you are OK after a 2.5mg drop but after a few weeks (or less) the pain returns then it is most likely to be too low a dose. The same applies - back to where you were OK, stabilise and try 1mg at a time.