Failing to reduce again

[DogAgilityObsessed]

I am so fed up with this disease. Having failed to reduce last year I ended up back on 10mg by the end of the summer. GP tends to leave me to manage myself but said last October (ish) that he’d like me to try reducing again. So I successfully tapered to 9mg over seven weeks. I left it a few weeks and then reduced to 8mg, again over seven weeks. I decided to wait a few weeks to ensure all was well before starting the next taper (my plan was to only go down 1/2mg a time from then on).

And now I’m in agony again. Pain is mainly legs and hips/buttocks with just a heavy feeling in my arms. I did take some paracetamol which temporarily took the edge off the pain for a few hours but that was it. I was fine until the last week of the taper to 8mg but started getting slight pain in the night a couple of times. Then it gradually got worse at the end of the taper.

So reading the pinned post about flares and the bucket analogy (that sounds exactly how I’m experiencing it) I think I should up the pred dose again.

And this is where I’m stuck. What should I up the dose to and for how long? I think 9mg was the last dose I felt fine on but should I go to 10 initially or even more followed by a quick reduction to 10 then a taper to 9mg?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this .

This link contains advice on how to deal with a flare….which think maybe you need to do (again) - bad luck -

healthunlocked.com/pmrgcauk...

And I would start the 0.5mg tapering when you resume - at whatever dose you drop back down to - 9mg perhaps.

I know you say your GP is leaving you to do you own thing, but if you keep flaring he may well want to discuss - and maybe add in a so-called steroid sparer (such as MTX) - whether that’s a good or a bad idea I wouldn’t like to say.

As you’re about 3years into your PMR he may consider you should be lower, depends how much he knows about the disease.

But I do have to ask, as you seem to be flaring around same level are you trying to plough on through your illness without due care and attention? Not a criticism, just asking……

[PMRpro Ambassador]

I cannot say it often enough: you are not reducing relentlessly to zero, you are tapering the dose to find the lowest effective dose for YOU (not the lady next door), AT THE PRESENT TIME (not next month or next year). Tapering and reducing are seen by experts as being different. It is also called titration - GPs should be used to the concept, they often use it for BP meds, starting with a low dose and working up to find the dose you need, rather than starting with a random dose and discovering it is too much and the patient flakes out because of low BP! With pred you start high and work down - so the symptoms are dealt with and you aren't playing catch up all the time.

You have found it - 9mg probably. It doesn't mean you won't get lower, just not yet. Trying to force the drop just results in not all of the inflammation being dealt with - and then it mounts up. Some people need more than others - because the amount of pred you absorb, the bioavailability, varies from patient to patient and can be between 50% and 90%. It isn't the 70% average many doctors assume. Or their disease activity is greater. Or they need to work or be more active than others - as a carer for example. And there is always stress - almost always ups the amount of pred you need.

It took me over 4 years to reliably get below 10mg with my original episode of PMR before it returned with a vengeance a few years ago and since then I cannot get to 10mg, never mind below it. There are a lot of people on the forum with a similar problem. Some get lower by taking methotrexate but that isn't guaranteed either.

[piglette]

I think I would up by 5mg for a week or so to hit the PMR on the head and then drop down to 9mg if I felt OK. Then reduce by 0.5mg from there when you felt ready.

[Twopies]

I’m in the same sinking (stinking) boat—trying to reduce from 6 1/2 to 6 using the long dsns method, my third time around to try this. But I have other physical ailments (don’t we all?) that are doing me in; it’s all so frustrating. When I increase by 5, I don’t sleep (I already don’t sleep), I don’t poop, I’m jittery, anxious, irritable, etc. (my body doesn’t like prednisone, or much of anything else for that matter). The muscle wasting has made everything worse. So I too probably will bite the bullet so to speak and increase for awhile, then drop to 7. My best wishes to you. P.s. my wonderful gp let’s me handle my own prednisone for which I am grateful.

[PMRpro Ambassador in reply to Twopies]

If you are failing at the same sort of dose each time - that is your body telling you you are already at that lowest effective dose. And if you try to force reductions - it will get harder and harder.

[Twopies in reply to PMRpro]

It sure is getting harder and harder. That’s the part I guess I didn’t understand. It was very hard for me to admit that I’m a long timer when it comes to pmr, just thought I would be off the stuff within the average time. No so, I’ve found out. Trying to accept, hard but I have friends with ra, osteo, fibro, lupus, and worse who function a lot better than me. That’s what makes it so hard.

[PMRpro Ambassador in reply to Twopies]

You need what you need to function - and only you can determine that. If you try to "manage" and accept a bit of pain, then that may mean there is left-over inflammation not being dealt with and it will build up and you end up back where you started.

But some of the pain may be something else - so this is the point at which you have to slow down the pace of reduction. Stay at the new dose for a couple of months to be sure it is still enough for the symptoms to remain stable and not for any PMR ones to get worse.

If paracetamol improves pain it is almost certainly not due to PMR - and you can add in pacing and lifestyle changes to improve your quality of life. But you need to accept that and stop fighting it - the energy you waste on the fight can be far better utilised in living better.

[DogAgilityObsessed]

Many thanks for all replies. Forgive the brief combined response but I've been busy with my parents (both have dementia and I am doing a lot of caring for them - well done PMRpro for remembering!) and DorsetLady is probably right in questioning if I am trying to do too much. I'm trying to have time for me which essentially means training my 9 month puppy (on top of a little gardening and agility judging 🙈)

I did read the useful pinned post DL refers to but missed the bit about dosage at 4:00 this morning. Anyway I upped my dose to 14mg today and felt a lot better by midday. Have started getting some additional pain now and will stick at 14mg and see how it goes.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Ok……do appreciate you have a lot on your plate, and although some of your activity is ‘you time’ and enjoyable you do still need to set aside rest & recharge batteries time.

[borednow in reply to DogAgilityObsessed]

Good Grief - I may have to have a little lie down just reading about your schedule. Do try and slow down a bit - really pleased about 14mg bit though - so combine that with a bit of a slower schedule if you can. Fingers crossed feeling better bit continues.

[Billiebobdog]

Nothing to add but hi from another agility bod, only I haven’t really gone back to it in a big way since the world stopped and the PMR started - although just done two days of agility for the first time in forever and remembered how much I love it and yes training two novice dogs, plus a new pup coming in a couple of weeks! (madness is an agility competitor)

I am surprised that you are able to judge, it’s a massively long day for you on your feet all that time so maybe, just maybe dialling back a bit might help, if you haven’t already done that and reducing the runs you do at competition