I can't drop at the fast speed recommended by my rheumy.

Bones, joints and muscles
1

I had dropped from 25mg to 13mg on my rheumy's programme in under 5 weeks (far too fast I now realise) and after 8 days on 13 had agonising spasm in my back.  Went up to 15mg immediately and stayed there for 4 weeks, but still with pain in my right fingers and lots of depressing back ache.  So 2 weeks ago took myself up to 16mg and told rheumy I would do tapering myself and much more slowly, to which he agreed.  Have felt so much better on 16mg with much more normalo life.  Hope to be on 10mg by Christmas (after a year of PMR) but rheumy wanted me to be on 10mg by June!! Horrors!

Question?

After 4 weeks would it be better to go 15/16 on alternate days for a week and then try dropping to 15mg for say 3 weeks?

Or would it be better to go straight onto 15.5mg? And stay on that for 4 weeks?

I realise it is trial and error and we are all different, but wonder if anyone else has terrible trouble tapering at this level even though this shouldn't be like trying to drop down from 10mg.  I seem to be very sensitive.  Some people seem to be able to go from 15mg to 12.5 with no trouble.

Frustrated!! 

2

I've been on Pednisolone for just 8 weeks.  Started at 20mg, dropped to 15mg after 2weeks then to 12mg after a further 3 weeks and have just, after another 3 weeks, reduced to 11mg.  Apart from a little soreness in my upper arms and a few niggling aches here and there I've been ok, however, as you say, we are all different.  Hope you continue to do well.

3

I reason that the big-step drops in dosage are being recommended so as to quickly determine the patient's actual dosage requirement after some initial heavy dosing to restore the patient's bloods/symptoms to more-normal values.

Especially as Fran mentioned, that we each have a different set of disease parameters, a determination needs to be made as to minimum tolerable dosage lest the patient perhaps be over-medicated on pred.

Doctors are obviously taught of the real dangers of higher dosage levels, and I suppose that they are counting on the patient to report back when the dosage suddenly isn't sufficient to control symptoms.

I have a very quick email communication directly to my pcp and rheumy, so in my case there wouldn't be any prolonged period of unnecessary suffering unless I didn't communicate my worsening condition. I actually tapered at 1mg/month until I was having serious discomforts and disabilities, but by that time I had been reading regularly on this specific forum so began adjusting my dosage taper when I was unable to sleep comfortably.

Different symptoms became critical at different times in my two+ years with pmr, and for each one I had to make small dosage adjustments, ultimately adjusting the "straight-line" taper schedule orered by my rheumy into a sort of "ski slope" curve that stretched way out from the 6mg/day level and onward.  I am currently dancing between 1.5mg and 2mg/day as needed.

And fortunately my prescriptions have allotted me large bottles of medication, with the rheumy perhaps getting feedback as to my usage depending on how often I order another allowed refill from their pharmacy.

Allowing for the fact that I made my own adjustments to dosage, and so using far more pills than wuld have been indicated by the prescribed 15-month taper (from 15mg to zero), the original prescription lasted exactly 25 months before I had to come in for a second set of blood tests, and this was no accident. I believe that the amount of pills I used in two years was therefore a typical amount for an average pmr sufferer that my rheumy has had experience with of has read up on in the literature.

The bottle of (300) 1mg pills that I was subsequently prescribed just may get me to the finish line, zero mg, and that is my hope!

I do hope that the rest of you are being given ample supply levels for adjusting your dosage as needed.

4

The quick tapering is the most common issue faced by the most part of us .

Doctors seem to do not understand it or whatever their problem may be .

There is a moment we must take the tapering thing in our own hands .

You are not alone.

Following a wrong tapering comes a flare up and this is the way it goes...

Keep safe🌺

5

Thank you for  that.  My rheumy did say he was amazed I had been able to drop down so fast. My bloods are tested monthly and have been normal for a while. I realise they want patients to get down asap because of the damage the Pred is doing in high doses.

You are nearly there......   Good Luck!

6

Gosh you are doing well.  I had to start on  30mg.  All very tricky I find.

Good Luck.

7

I'm not the one to answer this .. but I do no slow drop is the only way to go m.

8

Ive had pmr for 18 months started at 20 mg and was down to 2.5 in nov but had a relapse went back to five and then started self dosing by alternating days on lower doses. Eg first week 3.5 for six days and 3 for one day then very gradually ad more days each week on the lower dose. Im currently on 3.5 and feeling better. I do find lowering the dose at these lower mg brings on a large amount of withdrawl symtoms increased pain fatigue and gi problems. I find if you tough it out it passes in a couple of weeks. My measure with the pain is if it prevents me from sleeping i will stop the taper and allow my body to catch up.

Good luck Joanne