a cautionary tale! Having got various things out the way, from fractured vertebrae (healing well) to big birthday, I thought it time to start tapering towards my holy grail of 10mg prednisolone. So started 5 week taper from 15 to 12.5. I still had some pain and difficulty walking but put that down to all sorts - from other people’s cars, chairs, toilets, to other stretches and stresses I’d done. I also ignored being bad tempered, shouty, tearful etc. Anything but PMR, I also ignored PMRpro saying the PMR always wins.
long and the short, it has won. Week two of taper and I could hardly move yesterday. OH had a few observations and suggestions!! This morning I increased to 25 to mop up the ‘bucket’ overflow. Not a miraculous result but definite improvement today. Plan to have 3 days at 25 and then drop to 20. Is this a good plan? And then, how long to stay at 20 before I try the taper again? And when to admit to my Rheumy that I need the Leflunomide? All advice very welcome!
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Japsquar
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Actually going to 25mg is a tad OTT particularly off your own back… usual advice for dealing with a flare is in this link is to add 5mg to last dose you felt well [so 15mg plus 5mg - 20mg].
Following that protocol you can safely stay on increased dose for up to 14 days without impacting on drop back down.
In your case , I’d reduce to 20mg at the 3 day mark then at the 14 day mark -[which will include those days on 25mg] - you can drop back down to 15mg… and suggest you stay there for 3-4 weeks, and reduce by 1mg a time…and continue the slow taper…
Are you still on TCZ/Actemera as bio.. if so, why Leflunomide?
Thank you for prompt reply. Yes, I thought 25 was a bit much but felt so awful in the night! I will follow that plan. No, am not still on Actemra, it wasn’t working for me.
You should not reduce until you feel you are OK at your current dose. It does sound quite a high dose if you were down at 12.5 though. You should get at leasr 70% improvement. If you don’t at 25% perhaps you should probably talk to your doctor.
I would go so far as to say that if Actemra didn't work for you - MAYBE that accounts for any difficulty in tapering because it may be something other than PMR.
What was the problem/timing of feeling so awful during the night?
From early evening everything I did was painful. Things that were painful before moved up the scale, things that were stiff and uncomfortable moved into pain. Worst in the shoulder, neck, arms, then ribcage, knees. And ankles very stiff as oedema worse at night. Managed to sleep some after 2am when I took pred.
There is a form of inflammatory arthritis that can present looking just like PMR but the night time pain tends to be earlier in the night than when PMR worsens. It will respond similarly to pred but Actemra is unlikely to help it - although, was the problem with Actemra that it didn't work or that it caused diverticulitis?
The other thing is that the antiinflammatory effect of pred lasts 12-36 hours depending on the patient so if you are at the lower end of that range, the pred works for a time but the symptoms return before the next daily dose is due. That can be improved by splitting the dose, about 2/3 in the monring with breakfast and the rest sufficiently later to extend the symptom relief to 24 hours. It might be worth trying that.
The Actemra didn’t work but there was also the association with diverticulitis. I hadn’t thought of splitting the dose. I might give that a try. Why breakfast time for the first dose rather than 2 am ish?
Sounds like all of my tapers and attempts, lol..but usually the pain is back within 3-5 days. My docs refused to give me 1 mg pills so I could go more slowly without chopping the 5 mg pills more than once like I do now , what the heck? I emailed them this week and this time pretty much demanded the 1 mg pills..haven't heard back yet.
As for you, I would follow DorsetLady's advice below. I don't know anything about leflunomide, so I cannot comment on that. Keep us posted, please.
You can taper more slowly even with intransigent medics refusing to provide 1mg tablets by using one of the slow tapers and repeating each stage a few times before proceeding to the next stage. Even with 2,5mg at a time, if you only miss that 2,5mg once in two weeks the first time, twice in 2 weeks the next, even repeating each of those once or twice, it is possible without flaring badly.
When I first developed the DSNS approach it was partly to help people on enteric coated pred which can't be cut and back then there was no chance of getting 1mg e/c so you had to go 2.5mg at a time.
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