A brief tapering question

[Ozark]

When does one know when it is time to start tapering? Should one be "completely" free of pain and stiffness, or can one still have some slight degree of stiffness and still initiate a taper without inducing a flare? Basically, the question is should one be totally free of symptoms before attempting to do a taper?

[PMRpro Ambassador]

Some people never are free of symptoms. If a 15mg starting dose leaves symptoms it is worth trying 20mg for a week to see if it makes things better. Either way, remaining at that starting dose for a month to be sure you are stable is the place to start. And then you reduce in small steps, not more than 10% of the current dose. I was probably 90% pain-free after a month but the hip and handfoot pains hadn't gone entirely. That took months really ad was well after I'd started reducing. And there is likely to be stiffness and some pain in the mornings, depending on what time you take your pred dose and how long the antiinflammatory effect lasts for you.

[Blearyeyed]

Haven't we already answered this question for you on the other post Ozark?

I hope you are not hoping for a different response , or thinking of tapering from you 11mg yet as you have only just got on to it and still weren't sure if it was high enough?

In your case , and generally , as said before , stay on the dose you feel you are comfortable and mainly PMR symptom free at for a month to 6 weeks . Then , start a slow taper giving your body at least a week to rebalance and restore itself before the next taper down. If you are ill , having increased symptoms , in stress or having a busy week like a holiday , lots of travelling or events to attend do not try and taper at the same time as these are flare triggers. And if you find side effects like anxiety or insomnia are too much , don't just try and rush a taper but go and organise a steroid sparer or other drug and non drug help to reduce these side effects as you taper under supervision.

[Ozark in reply to Blearyeyed]

Actually this question is slightly different from the other question that I asked. What I'm looking for here is a strict definition of what is meant by symptom-free. I currently have morning stiffness to some degree which gradually abates as the day goes on, but of course all of this is while I'm taking 11mg of pred. So again I reiterate my question: do I have to be *absolutely* symptom-free, including morning stiffness, before I consider a taper? I am not looking to do this anytime soon but I am trying to establish the criteria for doing so.

[PMRpro Ambassador in reply to Ozark]

There are no strict definitions in PMR. Not even by research medics.

Morning stiffness is a natural part of ongoing PMR. The inflammatory substances, cytokines, are shed in the body at about 4-4.30am and start their effect then. The optimum time to take prednisone to reduce this effect is 2am, the peak blood level of pred is then reached before the cytokines appear so they can't do their worst.

There are various ways of managing that - timing of the pred dose is critical, splitting the dose works too. So my response is no different really: the degree of absence of symptoms on your starting dose is your guide. You shouldn't feel worse after a taper is completed than you did at the start. And it may pay to experiment a bit with timing and splitting of your dose to achieve a better management.

[Blearyeyed in reply to PMRpro]

Thanks Pro !

[Ozark in reply to PMRpro]

Thanks! Got it.

[Noosat in reply to Ozark]

All our bodies are different as well as how we define pain/discomfit levels. Therefore, I think this is a decision we have to MAINLY decide for ourselves.

[braininjurythepits]

In my experience, I’ve been on 10mg since Sept 2018, I was completely pain free during that time. In November I tried tapering to 9mg but noticed some symptomatic pain returning, so went back up to 10mg. I’ve now, this last couple of months, successfully spent more than a month on 9mg, after tapering one day 10mg, one day 9mg for a month. I’m now going to start tapering again, but just 8.5mg. I’ve decided that if it’s going to take at least two years, I may as well take it really slowly! I wouldn’t have known to take this cautious approach without the very helpful advice I’ve gleaned from contributors to this forum — so, thank you! 🙂

[Ozark in reply to braininjurythepits]

Well, thank you. It is very useful to me to hear your actual story and thoughts as regards the tapering process. I may eventually use a similar approach starting from my recent 11 mg level.

[Gary1310]

My Rheumatologist at Marshfield Clinic, Wi., guided me in my taper-since I was diagnosed 9 months ago. I was started at 20 mg for 2 months then gradual 17 1/2,mg for 2weeks,, 15mg. 2wks, etc. in Sept. I was told to reduce 1mg. Per month. I am currently on 4 mg.m will start my 3 mg. Taper on Nov. 1. It has been mostly uneventful. Minor twinges of pain, which I ignore. Fatigue was a problem. I had my bi annual appointment with my GP yesterday. My Adrenal function is now normal. I am feeling well.