First taper: New PMR diagnosis here, learning so... - PMRGCAuk

PMRGCAuk

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First taper

Egunon profile image
6 Replies

New PMR diagnosis here, learning so much from this group. Thank you all.

I’ve been taking Prednisone at 25mg for almost 4 weeks now and will be starting a taper soon. I started on 15, with welcomed but only partial symptom relief (? maybe 50%, lasting 1/2 the time to next dose). Dose was then increased to 20 mg which provided good symptom management, but failed to maintain the relief to the next dose. Both the 15 and 20 were taken in one dose. At 25mg, symptoms have been pretty much completely covered for the full 24 hours with split dosing of 15 at 2 am, and 10 at about 8 am.

I’ll be seeing my primary care provider soon for taper discussion/decision and want to be prepared. I’ve read many posts on strategies for decreasing including DSNS . Most posts seem to address the difficulties of dropping in the single digit range of dosing. As I’m about to try a first decrease, I’m wondering if the 10% rule should still apply, or might a larger drop be reasonable at the level I’m on now, say going from 25mg to 20 in one step. Perhaps using the DSNS method?

I’m a 75 yo female with pre-existing left eye cataract (appointment with eye surgeon pre-PMR scheduled), a recent dexa score of -2.7 left hip, and A1c of 6.1%. Side effects pushing these results further are of obvious concern, but maintaining forward progress in symptom management and self care are priorities too.

Thoughts on managing the first step in taper? Thanks.

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Egunon
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PMRpro profile image
PMRproAmbassador

Originally we were thinking about tapering being required at lower doses - but it depends on the individual. Most doctors will do 5mg down to 20mg, then 2.5mg down to 10mg but many patients can't even manage the 2.5mg drops. The 10% really applies at any dose - but again, it depends on the person. I know a lot who have struggled at anything above 1mg at a time, even at 25mg. You have to try - but if it fails, don't wait in the hope it will improve, go back, and try a smaller jump. It is very difficult to distinguish between your body protesting at the drop in its fix of pred (starts immediately but gets better fairly soon) and the inflammation swimming to the surface (usually takes a few days and gets steadily worse). Either way it is uncomfortable and need not be at all if you go slower.

That Hba1c is on the high side at 6.1%/43 - but cutting carbs drastically, especially processed carbs and added sugar, has enable quite a few people to get it back down to normal range at under 40.

That hip t-score is lowish - I imagine someone will broach the topic of medication soon!

Egunon profile image
Egunon in reply to PMRpro

Thanks for your response. It has helped curb my enthusiasm for getting to lower doses too quickly.

According to my testing lab, the reference (normal) range for A1c is 4-6%, so I was thinking at 6.1%, elevated, but not too bad. I have stopped sugars, processed carbs already so hopefully that will improve.

Hope you are well, and thanks again.

PMRpro profile image
PMRproAmbassador in reply to Egunon

Yes - pre-diabetic, just. But it needs keeping an eye on as it takes time to show the increases, it reflects the previous 3 months BS levels averaged out. And the diet also helps avoid weight gain - a far more noticeable factor.

Egunon profile image
Egunon in reply to PMRpro

Completely agree. Being extra careful with diet choices. So far, in the 6 weeks on pred, no weight gain.😁🤞

tytto profile image
tytto

Slow, slow taper - do not be TOO anxious. I tapered to 5 mg/daily twice: did not do too well. Now I am stuck at 7mg - I am an 86 year old female, basically pain free but very very stiff in neck, shoulders, hips and thighs. Mobility is becoming more of an issue due to the stiffness. Replaced knees function well.I will see the Rheumy in a few days as he does not want me to increase pred. Perhaps he may have another suggestion for what appears to be "elderly female stiffness syndrome".

PMRpro profile image
PMRproAmbassador in reply to tytto

Does 8mg make a difference to the stiffness? What dose DOES make a difference?

If it does - then I fear I'd be arguing my corner that at 86 I deserve a bit of decent QOL. I don't think they have a clue of how disabling the stiffness is, even without pain. And it is a risk factor for falling - which would be far worse than a tiny bit more pred at your age.

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