More advice needed please

[Pusph]

I would appreciate some more advice please. As stated before I thought I was doing well and had got down to 5mg on 3rd April this year after diagnosis in April 2022. My tapering regime was 15mg/12.5mg/10mg/9/8/7/6/5.5mg spending 5-7weeks roughly at each stage. I felt a few niggles at 5mg so increased to 6mg (where I'd felt OK) on 13th April then went up to 7mg on 16th April. As this didn't seem to do much I went to 10mg on 19th April where I still am. I still have a bit of ache and stiffness in my shoulders and sometimes neck and bruised sort of pain in hips at times. I will have been back on the 10mg for 2 weeks tomorrow after which as I understand it I can still try to drop back down (probs in a couple of stages) to roughly where I was. But I'm wondering if there's any point in even trying that when I still have a bit of pain now! Should I just stay on the 10mg longer in which case I'll have to taper normally from then on or should I give the drop a go, or should I just go right back to the beginning and start again, which I don't really want to do obviously. Am I actually just being unrealistic to expect no aches and pains at all. I have a face to face doctor's appointment on Friday but really need some advice before then. Thanks.

[DorsetLady PMRGCAuk volunteer]

I think I said in previous post you might not get relief at 10mg and may need an extra mg or two.. so really you have a few options -

maybe try an extra 1mg for a few days and hope that’s enough, or

bite the bullet, go to 15mg for at least a week and then drop back to 10mg, or

ride it out and see what doctor advises.

As for pain - did you get full relief on initial dose? That really is your point of reference…. The idea when tapering is to make sure each reduction gives you same relief the initial dose did. Most achieve no pain, but not everyone…

[Pusph in reply to DorsetLady]

Yes pretty much miraculous and quickly virtually pain free if I remember rightly when I started on 15mg. I started getting niggles at 5mg and conscious of PMRPros dripping tap started to increase. Should probably have gone straight to 10mg but went back to dose where I'd felt alright.

The pains have probably got slightly worse but certainly not at the moment unbearable (touch wood)!

[DorsetLady PMRGCAuk volunteer in reply to Pusph]

In that case might try my first option then….,

[PMRpro Ambassador]

As DL says - were you pain-free at the starting dose? Some people never are. Are these niggles like the PMR was at the start? Had you changed or done anything before they started up? You were at each dose long enough to see if the dose was enough - when they appeared did they stay much the same or were they increasing over time?

[Pusph in reply to PMRpro]

Yes, pretty much quickly pain free at 15mg. Certainly not as bad at the moment as I was at the beginning (touch wood) but I think the pains are increasing gradually. Hadn't really done much different except tapering the dose.

[PMRpro Ambassador in reply to Pusph]

PMR is sneaky - sometimes the underlying disease activity increases for some reason, Sometimes it is due to another illness and sometimes it is just so ...

[Ancestry1234]

Hi Dorset lady

I think maybe you’re trying to reduce too quickly. Your body needs time to adjust to the reductions. I have been reducing gradually over a long period of time. I reduce by one mg per four to six weeks allowing my body to adjust to the reduction. I know this takes a long time but it certainly works for me. I also have found that taking the prednisone at night is also working well for me.

I learned the hard way that you cannot reduce too quickly. Your body needs time to adjust to each reduction. I have been on prednisone since 2019 and this is the first time that I have managed to reduce as far 4mg per day.

Might be worth a try!!

[DorsetLady PMRGCAuk volunteer in reply to Ancestry1234]

Think you meant to reply to Pusph -not me …. I’ve been in remission and off Pred since 2016…