Niggles while tapering

[Lyra42]

I was diagnosed on 26 May. Started on 15mg Pred for 11 days, then 20mg for 3.5 weeks that sorted out all of the pain. (Though still experiencing extreme fatigue)

Doctor wants me to reduce so after a little tussle agreed to reduce 1mg/week.

19mg and 18mg were fine. In fact last week, on 18, I realized I was completely free of all ‘niggles’ such as soreness in my upper back for the first time.

Went down to 17mg yesterday and suddenly the niggles are back, including things that I hadn’t felt for a while - sore upper back and feeling inflamed around my knees. I wouldn’t call it pain but I know it’s the PMR breaking through.

My question is should I stay on 17mg for a few days to see if the niggles go or should I go back up to 18mg? (I’m still suffering extreme fatigue.)

Thanks

[SheffieldJane]

Weekly is a bit fast. Have a look at tapering programmes in FAQs. We should never reduce more than 10% and invest in a pill cutter for below 10 mgs. I always left about 4 weeks between tapers and made sure that my symptoms had settled before resuming. This can’t be hurried, it just leads to flares and having to increase your dose again. It is quite an art that some doctors are not conversant with. Perhaps show them the tried and trusted tapers in FAQs. So many of us have successfully got down that way, with no blips. DorsetLady devised one that is ace. Rheumatologists who specialise in our conditions approve.

Fatigue, I am afraid, is part and parcel of autoimmune diseases. Get in the habit of an afternoon nap and always pace your activities.

[DorsetLady PMRGCAuk volunteer]

As SheffieldJane said -.every week too quick -you don’t have time to know current dose is enough before you drop down. 2 weeks is still cutting it a bit fine - 3 is better. Would suggest immediate action back to 18mg and try to persuade doctor you stay at each dose for longer period.

[PMRpro Ambassador]

You are reducing far too fast - you need at least 2 weeks at a new dose, unless of course you get returning symptoms sooner.

And you ARE modifying your activity? I bet you did all sorts of things yesterday when you realised how well you felt ...

[Bcol]

Morning Lyra42. I follow a modified DL taper and run each reduction over a five week cycle. Even then I will/do extend it if its needed. Half a mg a time from 10mg downwards.

[Boss302Fan in reply to Bcol]

I agree, imo DL’s 5-7 week simple taper is the way to go. Easy to follow and versatile. Starting at 10mg I literally followed the 10 percent rule. Kept an inventory of 2.5 & 1 mg tables and used my pill cutter.

Going from 20mg to 10mg was fighting with my Rheumy who wanted me to do 2.5mg / 4 wk decreases. After 17.5 mg I had some issues and started doing my own thing. When I’d see my Rheumy quarterly he’d ask what dose I was currently own and not happy when I wasn’t where he wanted me.

I told him I had some flares (ok, maybe I fibbed a little, alright a lot.) and he started pushing me to take MTX. By the time I agreed to try, within a month COVID-19’hit and I needed to drop MTX to get vaccinated and never resumed.

[Bcol in reply to Boss302Fan]

I've been lucky with that. Never had a Rheumy and been looked after by my GP's. They have never pressured or even suggested that I taper more quickly. I keep them fully up to date with excel diary sheets. They think that I am best placed to know what my body wants and are very happy to leave me to it. They are always available though, have been right through Covid, arrange blood and other tests if/when I ask.

[Lyra42]

Thanks for the helpful advice everyone. The doctor said drop 2mg every 2 weeks so I negotiated 1mg every week. (I thought that would be ok as only 5% reduction per week as started at 20mg).So, from what you’re all saying, it doesn’t matter how small the reduction - whatever it is I should stay on it for 2-3 weeks?

[PMRpro Ambassador in reply to Lyra42]

We think so. 4mg a month at this dose (more than 10%) is still a lot for many people and in the first 6 months the disease activity can be still pretty high and you flare up easily. In fact, 2.5mg at a time but done slowly is better than 1mg a week. Your body never gets a chance to get used to where it is, A fairly standard taper is 20/27.5/15/12.5 with 3 or 4 weeks at each dose. If it works it is great. If one step doesn't, you go back and do 1mg at a time instead. That way you avoid relapses/flares and in the end it is faster after all.

[piglette]

I personally always allow four weeks for any drop, being a precious little flower, and at your dose a maximum of 10% per drop. If you find you have any niggles STOP. PMR always wins if you try and tough it out.

[Cosmos22Marigold]

I too am following DL slow tapering. Half mg every 5 weeks. All was going well. I started her plan at 9mgs. Got down to 3 mgs with no problems when i had a flare up due mainly to overdoing it. Had a very bad week with lots going on then noticed (painfully i might add) all symptoms returning. Advice was to add 5 mgs immediately for a few days but my head was so bad that i couldn't stay on 8mgs. I am 2 weeks into taking 4mgs and pains are gradually subsiding. I am staying on this dose until they ease more then try the plan again. Half mg every 5 weeks. It really does work if we do what we are told. I didn't by not resting enough because of problems that week. I hope to in future should more problems arise. Good luck.

[PMRpro Ambassador in reply to Cosmos22Marigold]

But remember however slowly you reduce - you are not heading relentlessly to zero, you are lookingfor the lowest effective dose and that may well be the 4mgs for now. No rush - here you have two problems to balance: PMR being kept in control and adrenal function returning and that can also cause aches and pains that can be very similar to PMR.

[Cosmos22Marigold in reply to PMRpro]

Thanks. I seem to forget about the adrenal glands kicking in. I will take each day as it comes and try and control my eagerness to get off of steroids which is what i have been aiming at.

[Jigsawlass]

My consultant has advised 1mg a month , currently on 10mg and reducing to 9mg next week.. I'm quite new to all this but your reduction does seem a tad fast

[krillemy]

👀

[Broseley]

My rheumy has me on reducing by 1mg every 6 weeks going down from 10mg. Doing OK so far. I get a few niggles after the first few days on a new dose but it settles down after a week. I'm going to post separately soon about not being able to get another rheumy appointment.