niggles or warnings?: A bit of context before my... - PMRGCAuk

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niggles or warnings?

Sibelius5 profile image
7 Replies

A bit of context before my question. I was diagnosed with PMR in mid August by my GO, who was straight onto it from my telephone description, had me straight in for a blood test, and responded to my face to face description with “polymyalgia” before checking the blood results which confirmed it for him as far as that’s possible - CPR 127. So I trust him. He put me on 15 mg prednisolone for six weeks, which worked its miracles, as it does. After regular checks with CPR down to 53 and then 6.1, we agreed to try to reduce to 12.5 at the beginning of September. I did that on a taper going down to 13.75 for a week, then adding in a 12.5 on alternate days for a week and then to 12.5 for three weeks. I did notice slight aches but they settled and I felt as ok on 12.5 as on 15. Then in the second week of November my GP recommended reducing to 10 but to do it in one go for the following week as I’d got a fasting blood test booked for the next week. He said that would give him a clearer sense of how to proceed. He did hear my anxieties about the rapidity, based on what I’ve learned on this site, but was so positive and optimistic, as well as reassuring me that if I hit any problems he would have me straight in and adjust things, that I decided to risk it, well aware of the extremely helpful insights and information from all of you on this website with the expertise and experience. So I did it and the CPR was 3.1. I have found the reduction relatively ok with this proviso - which is where my question comes in: as with the previous reduction, I’ve noticed my usual sites for PMR inflammation having niggly aches in the morning before taking the pred - I had split my doses of 15 and 12.5 so I took a small dose overnight and that was the evening one that I cut out to get down to 10. So I expected to notice aches in the morning as the pred wore off. But when do such niggling aches turn into PMRPro’s dripping tap of inflammation which will build up and gradually overflow the bucket? I’m not in any pain really and my mobility is not impeded at all . And once the pred kicks in, the niggles go. I can’t quite tell if they’re accumulating or remaining at the same level. My GP has said to stay on 10 until I see him again in three weeks, so that will be six weeks in total. He then proposes reducing by 1 mg per month or two months, depending on how it’s affecting me. So my question is, should I stick with the 10, or if the niggles accumulate, would it be sensible to go back up to 12.5 and reduce gradually back to 10 for when I see him? I’m definitely well over the 70% marker for my sense of how I am. And my impression from reading various posts is that getting down to 10 can be comparatively less of a bumpy ride for some people than what comes after that!

Thanks in advance.

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Sibelius5
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7 Replies
SheffieldJane profile image
SheffieldJane

I think in your shoes, I would go with my doctors advice. They seem very hands on and engaged, that is a gift. You know all the important warning signs and can take more Pred if the inflammation is getting worse. I would be very careful after 10 mgs, it is a whole new ball game. I had to buy a pill cutter and go down by half a mg every 6 weeks, halting at the first sign of trouble - Covid jabs have played havoc. Good luck 🤞

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Stick at 10mg for another few weeks... most experience a little discomfort before Pred kicks in, that's why we suggest if taking in one dose then as early as possible..

The fact that you cut out the evening one entirely , and then found a difference might suggest you would be better sticking with 2 doses - and reducing each one by a smaller amount at a time...

PMRpro profile image
PMRproAmbassador

Stick at 10 - and SEE if the morning niggles increase. I suspect they won't - they are due to the antiinflammatory effect not lasting the full 24 hours. Look at splitting the dose maybe? But I'm not sure that you are ready to taper 1mg/month yet ...

Sibelius5 profile image
Sibelius5 in reply toPMRpro

Thanks - that’s very helpful. I wouldn’t be reducing until after I see my GP again on 18th December - does that sound too soon?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSibelius5

As past and present patients we always think it’s best to be at each dose for at least 4 weeks, and only reduce if you feel okay [doctors may, and do disagree ]…

Plus it’s a week before Christmas-which in itself is always a bit stressful - however much you enjoy it - so suggest you wait until new year….

Sibelius5 profile image
Sibelius5 in reply toDorsetLady

Definitely a good idea - thank you

PMRpro profile image
PMRproAmbassador in reply toSibelius5

I agree with my friend! NOT a good time to reduce at Xmas ...

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