I’m looking for a little clarity. I’ve been following a PMR Pred tapering plan which has taken me from 20mg starting in 4/24 to my current 6.875mg. My next taper will be 6.25mg (2.5+2.5+ ½ 2.5) in a few more days. Trying to stay close to the 10% mg reduction each taper I have experienced only one flare which was resolved quickly. Throughout the tapering effort I occasionally have minor symptoms - neck and shoulders but mostly hands and wrists. The pain is mild but noticeable. Frequently unnoticeable by the afternoon. It does not prevent me from doing anything I want to do. The last time I was completely symptom free was at 10Mg.
My questions:
Should I be symptom free before the next taper? Am I rushing?
Is the mild pain just next lower dose withdrawal symptoms? and should be expected?
My wishful thinking is to encourage my adrenal glands, my HPA complex to increase my cortisol production. The mild pain I feel is well worth that trade-off. What do you think?
Thanks
Written by
PMR6498
To view profiles and participate in discussions please or .
You probably won't want to hear this, but if you have any symptoms a new taper should be done very cautiously. A rule of thumb I tried to follow was, "Never feel worse at the end of a taper than at the beginning." It's not entirely clear from your post whether the niggles you've felt throughout have remained fairly constant or if they have diminished, or increased. But that's what you need to be careful about. If you are experiencing any increase, if your most recent taper(s) have been more uncomfortable, you may have reached or even passed the lowest best dose which still effectively controls your symptoms. I think in your position I'd be tempted to pause the taper for awhile and see what happens with the niggles.
Another adage often quoted here is, "It isn't slow if it works." I successfully, after several years, achieved zero pred some months ago. I can tell you that I have no PMR pain at present, no "niggles" even. When I previously attempted zero (2020) I had to go back onto pred because I'd accepted the niggles as my normal. They were not. Both of these tapers to zero were done extremely slowly, and it's great that you are tapering slowly. But the thing is, as long as the disease is active it doesn't matter how slowly you taper, there will come a point where you need what you need and will have to keep the dose steady for a bit. You are the true judge of that, but take my story as a bit of a cautionary tale! 🍀
Like HeronNS I’d advocate slowing down considerably…. It is not a race.
Your illness is self-limiting , so it works at its own pace, all you are doing is managing the inflammation, not curing the PMR, so take your foot off the gas for a while.
If you were completely symptom free at 10mg, then that should be your benchmark at the end of every taper…. If it’s not, then you are pushing too hard.
Your adrenals will also be encouraged to work by a slow tapering plan..
"Should I be symptom free before the next taper? Am I rushing?" Simple answer to that question is probably yes. Like HeronNS I've now been pain/symptom /Pred free for a few months now but it took me over four years to get to that point. The lower you get the longer you will probably need to make your tapers. In your situation, I wouldn't be thinking about the next taper and I would be tempted to go back to 10mg to see if that removes all the present low level pain. If it does, then stay there for a few weeks, then start a slow taper down from there. 0.5mg every five weeks (DL taper) worked well for me.
You'll know if you have a flare up I think. I was fine on 7mg (after tapering for months). On 6.5mg it felt a bit achy and I had fatigue. When I tried 6mg, all hell broke loose. I nearly called an ambulance. Just go slowly. Half a mg a month.
Hi, PMR6498. In response to your question, “What do you think?” I will be blunt. I believe that wishful thinking may well lead to poor decision making in terms of it having no firm base. You can’t force a result by wishing for a particular outcome but you can be optimistic which to me is a more positive theory and involves that which may actually be achieved through tried and tested means.
I would say that you've been quite quick coming down to 7mg from 20mg in 9 months. My taper plan was over 4 weeks for each taper of a less than 10% reduction and then wait for 2-3 weeks at the new dose to be sure that it was sufficient.
Just to say, I agree absolutely with HeronNS, and Bcol. I took steroids for PMR for just under 8years, and never attempted a taper unless I was completely symptom free.
As I have posted before, you need lots and lots and lots of patience with PMR.
Some people would never reduce if they waited to be pain-free! But it depends what is causing the pain - some things aren't helped by pred and they are likely to be there whatever the dose.
It is important to learn to recognise YOUR PMR and the starting dose relief is important - the symptoms should be relieved as much as possible and stable, the same with the markers if they apply. That's why we find the doctors' insistence on low doses and immediate reduction can be contraproductive. If there is some pain left - try a bit more pred first and see if it improves matters and THEN start the taper. And the level of symptoms relief at the starting dose should provide a measure for ongoing tapering: you shouldn't feel worse at the end of a taper than you did at the start. If you do, then don't start the next stage but wait a bit to see if it improves or gets worse - and if it does, go back to the previous dose, you aren't ready for the next taper.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What is a flare ?
Which direction should I take now?
Tapering after a flare. It wasn't just Carpal Tunnel syndrome!
Lilydunn
Second Rheumy appt went well but....
