How fast to taper when below 1 mg pred a day?

[Joydeck]

I am presently at 0.9 mg pred, thank goodness, and have been reducing by 0.1 mg every three weeks.

Is this rate of taper reasonable and should continue it down to 0 mg pred six months from now?

[PMRpro Ambassador]

If you can do it at that speed just keep trying. The only thing I would wonder is whether you would notice getting to too low a dose for the inflammation with only 3 weeks at one dose. I might consider a bit longer at 0.5mg to be sure that is still OK. Never had anyone dropping in such small steps before!

[Lookingforideas in reply to PMRpro]

Good point - I did notice tiny intermittent signs of aches and stiffness at around 3.5ish and so I started using the slightly bigger bits and averaged about 3.7ish for about the next month (I say average as it can vary about 0.1 ish due to the randomness of the cuts ) and it seemed more settled so i started edging back towards 3.6 & then 3.5 again, but you’re right, we do need to be really alert to ‘creeping inflammation’ when we’re doing this sort of creeping reductions - I just kind of fell into doing it and I keep a log of the daily dose taken so I can monitor it. It is a little bit time consuming and maybe if I wasn’t ‘locked down’ I wouldn’t have bothered with all the chopping and faffing about, but it keeps me out of mischief 😂😂😂

[Joydeck in reply to Lookingforideas]

My 3½ year log of the daily dose taken (and PMR flares) is a, now, large Excel spreadsheet.

[Lookingforideas in reply to Joydeck]

Ha ha, you are so organised 👍. Mine is just a note of the dose taken in the daily page of my food diary, but then running totals of weekly averages in the notes section so I can see overall levels at a glance. I aspire to being organised enough to do a spreadsheet🙄

[Joydeck in reply to Lookingforideas]

This snapshot of my spreadsheet, of 3½ years, showing my earliest days with PMR may interest you.

The very first entries in my now large PMR spreadsheet.

[Lookingforideas in reply to Joydeck]

Ah, thanks I’d be really keen to see it, but I can’t see the snapshot. There’s just a big blank square. I wonder if this is the same issue as the non working links? I’m using the phone just now though, so I’ll try to open it on the computer later as I might be able to see it on there 🤞

[PMRpro Ambassador in reply to Lookingforideas]

It's working fine for me so it sounds as if it is a problem specific to you. Cookie settings maybe?

[Lookingforideas in reply to PMRpro]

Ha ha, if you knew how incredibly inept I am with anything computer related (and I have an irrational fear/hatred of them) especially when it’s settings, cookies, anything really, other than word or a little bit of excel, just turns my brain to jelly and my stress levels skyrocket just talking about it ... I think I’m almost computer phobic ? My phone is an old iPhone 6s (whatever that means) and a couple of people have said as the models age they aren’t supported as well (by whom?) so maybe that’s something to do with it? 🤷‍♀️

[PMRpro Ambassador in reply to Lookingforideas]

One of my phones is a Nokia 3310. And original not a retro version. As for Excel??? Horrors - I can read a spreadsheet, maybe. Create one? Why would I?

[Lookingforideas in reply to PMRpro]

😂 i wouldn’t have done either but I have to do my taxes - quarterly in Spain as I’m not resident 😱, and annually in the uk - and the Spanish stuff is also taxable in the uk as well 😳 so,

I learned to do it for that reason ... so that I could copy most of it over from one spreadsheet to another rather than. have to do the same bits all twice over as well as having to convert the euros to GB£ etc etc ( I’m too tight to pay an accountant to do it🤪)

[PMRpro Ambassador in reply to Lookingforideas]

At least we are resident here so annually for both and OH does the spreadsheet stuff! We have accountants for both - worth every penny to get it right but he gives them both all the prepared details. He was self-employed so still has to pay in advance here. Italian tax stuff fools the Italians so I don't mind paying as it has been very complex, The unions will also help you do it free but I don't know how much you have to do for them. Not sure what happens now after the B word. How does that affect you?

[Lookingforideas in reply to PMRpro]

The B word ? 😱 in a nutshell - Badly! ... In so many ways, but on the tax front it’s a total nightmare 😭 ...

[Lookingforideas in reply to PMRpro]

I do use lawyers/accountants in Spain but I have to do all the prep and the spreadsheets and collate the receipts etc, then they just file it with the tax office and pay the taxes... for an inordinately expensive quarterly fee. They charge per property and per owner, so as we have 2 properties and own them jointly That’s 4 quarterly fees 😱. Daylight robbery 🤬

[PMRpro Ambassador in reply to Lookingforideas]

Our property portfolio (hahahahaha) is in the UK, we own the flats the daughters live in and their rent is part of our income. The other was our home briefly - sold a bigger house on retirement to move here and the only option in a crashed market was a small house plus the cash balance. Can't complain, we've had good tenants. No idea how this will all be affected now.

[Lookingforideas in reply to PMRpro]

It’s all a minefield isn’t it. But it is what it is and we just have to get on with it ... and try to not stress 😜🤪😜🤪

[PMRpro Ambassador in reply to Lookingforideas]

Not stressing now I have my medical cover here sorted out! Staying here as long as possible - it is such a novelty living in Italy where the government isn't regarded as totally cuckoo now. That's reserved for somewhere else

[Lookingforideas in reply to PMRpro]

While I’m on about ‘tech’, I’ve noticed my profile pic is an eagle or bird of prey. I’m not aware of choosing that or how it got there but I’ve no idea how I’d change it? Any ideas for when I have a spare day to try 😜

[PMRpro Ambassador in reply to Lookingforideas]

I haven't the slightest idea!!! It is a very long time since I joined and I don't do pictures ...

[SheffieldJane]

I am glad this has worked for you so far. There really is no urgency to get to zero, so I would relax basically. My only worry would be a slow build of inflammation that might catch you unawares. So whatever you do just be vigilant for any twinges that suggest that the symptoms are building. I would also carry on pacing activities and treating myself gently until I was sure that I was absolutely out of the woods. I really hope that your patience has paid off. Familiarise yourself with the symptoms of Adrenal insufficiency just in case. You are in an enviable and inspiring situation. Good for you.

[Joydeck in reply to SheffieldJane]

As you know, a build up of inflammation can occur at any pred dosage, and I have had several flares in the past three and a half years. So I am alert.

I would have thought adrenal insufficiency would have shown way before 1 mg pred. I have always exercised as though I haven't PMR, without repercussions.

[SheffieldJane in reply to Joydeck]

One of our members was found to have no Adrenal function at all following a Synacthen Test. This certainly gave me pause for thought, she had no idea. I can’t remember if she was off Pred altogether. I, in no way, meant to detract from your successful and carefully managed taper. I guess that I am just in worry mode at present.

[Joydeck in reply to SheffieldJane]

Your warning has been vindicated! I have been stuck around 1 mg pred a day since February.

Flares from tapering seem less obvious at low levels of pred. I have trouble discerning bilateral PMR flares from muscle pain through walking with hand-weights (especially during COVID lock-downs). But, at worst, the pain is clearly PMR.

[SheffieldJane in reply to Joydeck]

It is strange how powerful one little milligram can be.

[PMRpro Ambassador in reply to SheffieldJane]

I wrote a post years ago "What a different 1/2mg makes ..." - and that was 1/2mg over 2 days!!

[SheffieldJane in reply to PMRpro]

You did!

[Joydeck in reply to SheffieldJane]

Maybe I have had trouble recognizing PMR flares because I have been tapering in just 0.1 mg increments since February? A flare would likely be unmistakable at larger increments, coming on quickly.

[Lookingforideas]

I thought I was the only one assiduously chopping tablets into varying sizes - I found this route when I was trying to chop them in half and the blade often went ‘squint’ leaving me with different sizes or sometime 3 or even 4 bits😜 - so being a ‘waste not want not’ kind of person I decided it would be a good ideas to guesstimate what relative size each piece is and put them in little pill box sections in size order and I just keep gradually working lower by mixing and matching the pieces to get the dose I’m after ... hours of endless fun 🤩 😂

[piglette]

I am very impressed that you can cut a tablet into 10 pieces!

[Lookingforideas]

I’m still around 3.5mg so I cut 5s 2.5s and 1s and guess what sizes I end up with, as they’re never two exact halves ... then I add ‘bits’ together if need be, to get the required dose. It’s a great game 🙄😂. Heaven only knows how that would work once under 1mg though as accuracy will get more and more difficult. I guess lots of ‘bits’ will become floor sweepings as you say?🤷‍♀️. Or Maybe revert to using Dorset Lady’s taper suggestion? When it gets too difficult or we get bored ‘chopping’?

[Joydeck in reply to Lookingforideas]

I break 5mg-pred tablets (110 mg tablets) by hand, weigh them on a 1 mg precision scale, and sort them into a 14-compartment pill box.

I sort six months worth at a sitting and, along with other medications, prepare four weekly pill boxes for the coming month.

[Lookingforideas in reply to Joydeck]

I’d never heard of a 1mg precision scale- now I want one - any recommendations for brand?

[Joydeck in reply to Lookingforideas]

I bought the cheapest from China. Search for this on eBay: 20g 0.001g LCD Scale

[Lejazzhot in reply to Lookingforideas]

A compound pharmacist makes my methlyprednisolone in 1mg and .5mg. Big help

[Lookingforideas]

Thanks, it sounds like my ‘avatar’ might be the same one. I don’t remember choosing so maybe it was a default one. Thanks for the info - I’ll try it later - 🤔 😂