Tapering

[caftan]

Hello everyone, it's me again. Following on from my telepephone conversations wih 2 GPs at my practice last week and this week, and my own GP subsequently referring me to a rheumatologist because of concern about the level of prednisolone I am on after 4 years, I am seriously considering tapering despite awful and relentless fatigue. Advice from PMR pro would be greatly appreciated. I started off on 15mg but had to go back up again when I got down to 10 - I think I tapered too quickly, then had to go back up to 15. I then tapered much more slowly until I got right down to 4 and a half per day in August last year, so it took a long time. I was Ok on that for 3 and a half months but then had a further flare and subsequently found myself back at 15 mg, where I started. This was December 2022. I then managed to taper down to 10mg by the end of December 2022. I stayed on that until May this year then tried tapering again down to 9mg slowly over 3 weeks but found I needed to go back up again to 10 on 12th June and that's where I have been ever since. I am frustrated and not a little depressed that I am still struggling on 10mg especially in view of my age, 83, which is why I am seriously considering trying to taper again but how slowly should I go? I was thinking 9 and a half one day and 10 the next over a period of time then maybe 9 on more than one day etc and see how it goes. What do you think?

[PMRpro Ambassador]

There are tapering plans in the FAQs which make the tapers less of a strain on the body. There is DSNS which is one I developed and DorsetLady's simple plan. Mine is a continuous plan, DL's is based in a weekly pattern. They both get you to the same end, it is up to you which you find easier to cope with.

But it depends why you are having to return to higher doses - is it because the PMR flares? If so and you always flare at a similar dose you may not manage to get lower. You aren't tapering relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that manages the inflammation successfully. If you flare due to overshooting you don't usually need to go back to the start again, we suggest adding 5mg to the dose where you flared and once the symptoms are under control, tper more carefully, But if your body and YOUR PMR needs a given dose, you won't get past that however carefully you go,

Prof Dasgupta often keeps patients on 2-3mg long term as it reduces the risk of relapses. 4mg isn't that much more. I didn't ever get under 10mg for well over 4 years, being at 4mg at 4 years was actually not bad and some rheumies will just say you are doing fine. But when you try to force reductions as you seem to have been doing then it makes it even harder and it gets worse each time you flare.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments…,

[singingloud]

I'm doing my best to reduce on the DSNS by .5 mg, but every time I get to move fro 8.5-8mg the pains return in my neck, shoulders and bottom. So I am adding 5mg extra for a week to mop it up and go back to 8.5mg for some time. Recently my husband has had a partial knee replacement surgery so I'm sure the extra work has added to it all. Listen to your body. I too am at the 4 year point in my journey. We can only do what our body will let us do. My heart goes out to you! It's a long road.

[HeronNS in reply to singingloud]

I hope I'm not speaking out of turn here, but it seems to me if you've had this block at taper from 8.5 to 8 and get so bad that you need an extra 5 mg to get back to where you were there may be a better way. Sounds to me like a yo-yo situation. Do you need as much as 5 mg each time? Or would it be a plan to admit that you actually need 8.5 for now, and stay there for the time being? I don't know how long you wait between tapering efforts, or at what point in the taper to 8 you start to experience the return of symptoms.

Possibly an even slower taper would help, next time you're back on an even keel and feel well enough to attempt a taper again. One way to slow down is to repeat each step in a DSNS taper so instead of 6 weeks it takes 12, or 3 months, to achieve each step. I used this method to taper from 2 to 0 (although I need to add that I wasn't ready for zero and ended up back on pred after a few weeks, so slow taper can help one get lower but ultimately doesn't fool the body if pred is still needed). The process took a whole year. Others have tried tapering by 1/4 mg a time, but I'm too lazy to attempt to chop a tiny pill into four roughly equal parts!

[Blacksley]

Ditto PMRPRo, it is very sound advice. I too encouraged, BADLY by my doctor have reduced both too quickly and sort the Utopia of zero Pred.

[Minutable]

I got by by lowering the dose by a half dose about every eight weeks,not worrying about any aches and pains for the next four or five days while my body gos used to the idea. Below one it was one every other day for six weeks, then one every two days,, one every three then none at all. My body still muttered for a few days,but I haven't had to return t to the pills,and I am still getting stronger eleven years later! Not bad for a 91 year old. Good luck, and don't give up.

[Minutable in reply to Minutable]

Sorry, should be months not years!!

[HeronNS in reply to Minutable]

I've read a number of people who successfully achieved zero despite the "muttering". But when I tried that I ended up with a major flare. Another example of how we are all different, and why this forum is such a blessing because we can share our disparate experiences. I'm so glad for you that you have done well.

[yogabonnie]

I agree with PMR PRO and with HeronNS and if it isn't mentioned above... could some of the flares be prednisone withdrawal which annoyingly mimics PMR symptoms. You must ride it out a little bit and see if after a couple weeks you still are in pain...and by all means go as slowly as possible. I tried "relentlessly to 0" and made a mess of things. Now sitting at 1mg. after 6 years and might sit there forever! why not?