Thank you for allowing me to join the forum. I appreciate it that sufferers from outside the UK (I'm in Australia) are welcome. I have spent the last few months absorbing the information on the site and very much appreciate the advice on slow tapering, and a flare versus withdrawal, as well as the fabulous bucket analogy.
I tapered down from 50 mg of prednisolone in August 2023 to 10 mg in October 2024. It had certainly been difficult at times but everything was going reasonably well. CRP had been normal from beginning of year up to and including a blood test on 18 October. Following that there was some pressure from the GP to drop to 9mg ASAP. With a slow taper I finally got down to 9.5 mg by 22 November but with considerable pain and all the usual PMR hot spots flaring, as well as lethargy increasing. The next blood test on 30 November showed CRP had increased dramatically to 28. Dr raised dose to 12 mgs from 9. 5 .
After 4 days, I found 12 mg hadn't helped (pain and lethargy were increasing) and I decided to go to 15 mgs which I felt was consistent with the flare protocol. That worked and the pain and stiffness has started to ease. An extra blood test yesterday showed CRP was down to 8.
I am a bit uncertain as to where I head next on the dosage. So far, to control the flare, I've had 4 days at 12 mg and 6 days at 15 mgs: 10 days so getting close to 14 days in the protocol. I consider that my last stable dose was likely around 11 or 10 mg.
I have been fortunate in that my physical symptoms have tracked very closely to my CRP measurements so far.
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AmbientB
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Everyone is welcome-no matter where you live.. the charity may be UK based, but PMR has no boundaries 😊
If you feel that 10/11mg was your last “good” dose, then return to that after day 14 at the higher dose. No point in going lower at the moment, especially as CRP is still a tad high.
Thank you. One thing I remain unsure of is what should happen if you need to go beyond the 14 days to remove built-up inflammation. That may be a rare situation I guess and very much depend on the individual - as so much with PMR does - but I presume dropping down again would require more steps in the reduction process if the 14 day period is extended. I am hoping that it doesn't mean tapering by 0.5 mg each month again.
We don't mind where you live, just prefer you to speak English of some form!!!
The 14 day bit is for adrenal-related things really, If you are above the physiological dose of pred - similar to or above the dose that is about what it is said the adrenals produce as cortisol then it is fine to drop 5mg after longer than that. You might notice it but that is the change in dose rather than your adrenal glands having gone back into hibernation - yours won't have come out of it at this stage, 10mg is still a bit high.
The other factor is whether it really was just overshooting - rather than a flare up of disease activity in which case you might not succeed in dropping back quite so far. Yours definitely sounds like overshoot. When will they learn that the CRP/ESR being OK only means that the current dose is still enough - doesn't mean that the next step down still will be? And that you need time to know the next dose is still OK. It sounds to me as if 10 was barely enough since you flared quite quickly once below it and it has been bad.
Yes, thank you, that's cleared up quite a things for me. And the GP is very good and experienced but he does get excited by those low CRP/ESR results. I suspect you are right about 10 being barely enough as I had only been at a constant 10 mg daily for around 10 days, before trying to taper again.
Just ask if something seems strange or unclear. They do get far too excited about normal markers and think it means the PMR has gone - you ARE in remission but only DRUG-INDUCED remission and if you take the pred away, the PMR emerges from its lair. It isn't any different from high BP - the GP gives you medication that brings down the BP reading but it is still there in the background and if you stop the pills your BP will go up again. Try that explanation if he tries to argue the toss.
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