Tapering

[Healthworrier]

My tapering from 15mg to 6mg had been pretty uneventful. However on 12th August I went to 5and a half all still ok and then down to 5mg on 16th August. Yesterday I started to feel aches in shoulders and thighs. I don't really want to up the pred. Any advice or experiences most welcome. Thanks.

[Hidden]

Hi healthworrier. Were you DX in January this year? If so you are tapering very fast. Did you do 1mg a month? I think you have gone past your spot. You should leave at least 2weeks before dropping to allow the body to get used to new dose and flare. I always left 4 weeks. You need to slow down and go back to the dose you last felt ok at. Don't forget tapering too fast is the main inductor of a relapse so it's pointless rushing it.

[HeronNS]

At this low level a month is safer. Also your adrenal glands need time to pick up the pace. At 5 mg most side effects should be gone or negligible so there's no need to rush.

Btw I was able to taper quite quickly the first year, although once a month once in single digits, but was stuck around 2 for a couple of years.

[Healthworrier in reply to HeronNS]

Thanks. If I carry on at just 5mg might the aches go away without going back to 6mg. Could it be that my adrenals need time to kick in. I am just worried that I might be heading for a flare. This seems to be such a juggling act.

[HeronNS in reply to Healthworrier]

I used the DSNS taper plan, from 10 mg I never dropped overnight from one dose to another. Why not try that method to go from 5.5 to 5?

[Healthworrier in reply to HeronNS]

Thanks. I'll give it a try.

[DorsetLady PMRGCAuk volunteer in reply to Healthworrier]

Personally I would go back to 6mg - you might find even just a week helps, but you may need a fortnight just to be 100% sure.

Then using a slow taper like the one linked below reduce by only 0,5mg a time.

At these level both your PMR and your adrenals benefit from a slow taper -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Sounds a bit fast too me. So you were on 0.5mg for 4 days before dropping another 0.5mg? There was barely any time to see if 0.5mg less was going to be ok. Remember 0.5mg is now a larger % of your original dose. Bear in mind also that you are well into adrenal function territory and if yours are still very sleepy, which is very likely, you’ll be getting kickback from that because they now need to be making up the shortfall. For comparison I did 0.5mg every 6-8weeks from 5-3mg and still I felt pretty tired and achey, but not stiff. I’m not medical and I only have GCA but I’d go up to where you felt ok until you stabilise then have another go but at a pace where your body can cope with the new challenges.

[Daffodilia]

I am down to 6 mg from 40 (started Oct 18) - aches and pains and stiffness gradually getting worse - use ice pack on shoulder- always feel better from 3 pm onwards

[PMRpro Ambassador]

Whether you WANT to up the pred is not the question - it is whether your PMR will be controlled by a lower dose. And getting to 6mg in 7 months has been good. Of course it was uneventful if you were still well above the dose you will need - and you have probably arrived there at 6mg.

It is nothing at all to do with adrenal function in this case - it is whether the dose of pred is enough to manage the inflammation. If 5mg isn't enough then all that will happen is that the inflammation will build up again until you are as bad as before and will need a higher dose to get it under control. And now you need at least a month between drops to be sure the new dose is enough. If you can, 1/2mg drops are also better as a reduction shouldn't be more than 10% of the current dose.

[PMRpro Ambassador]

And an addendum: You are NEVER reducing the dose relentlessly to zero. You are looking for the lowest dose that manages your symptoms as well as the starting dose did. This will vary over time, it may go up as well as down, the dose you get to at a given time isn;t the lowest you will get to - but it is the dose you need now. You will get lower, just not yet.