Trying to taper

[Magictherabbit]

Hi

I have never posted on this site before but read it every day . I’ve had PMR for 4 years now and have previously got down to 3mgs of prednisolone. At the moment I have gone back up to 5mgs as have been in a lot of pain in my upper body ….wrists and shoulders. The mornings I find difficult as I feel really spaced out …difficult to explain but as the day goes on I feel better. Really want to try and get off the pred but seem to be up and down like a yo yo .

I have a rheumatologist phone appointment later this month but feel I’m not really getting anywhere.

Would love some suggestions

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Sometimes the most difficult time is once you get below 5mg…..if not already you probably would be best to use a slower tapering method - see here for a couple -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Unfortunately once you start flaring, it’s seems to get more difficult each time to get things back under control, another good reason to use slower taper.

Plus of course your adrenals are required to start working again, so another reason for taking it more slowly - the spaced out feeling may be partly due to that - see this for info -

healthunlocked.com/pmrgcauk...

[Magictherabbit in reply to DorsetLady]

Thanks for your quick reply ….I’m going to try the 5 week taper I think . A little confused as to what you do at the end of the 5th week . I’m sure it’s simple when you get the hang of it

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

Either stay there for a week, 2 weeks or however long you feel you want to-or if you feel okay go straight into next taper. It’s really up to how YOU feel.

Good luck…

[Sharitone]

When I went down to 4mg about a month ago, I felt very much as you describe but it is improving now. I think it just has to be really slow from now. I also have an appointment this month, and am expecting a bit of a fight - I was supposed to be off pred by now. I no longer get my hopes raised about rheumy appointments, but I hope you fare better this time.

[Magictherabbit in reply to Sharitone]

Thank you Sharitone …it’s really nice to have people to chat to on this forum ….I don’t know anybody with PMR and it can be a lonely experience.

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

Yes it can that’s why we’re here - there’s always someone around…

[PMRpro Ambassador]

"Really want to try and get off the pred but seem to be up and down like a yo yo ."

We all want to get off pred - but the fact you are going up and down like a yoyo suggests you are creating a rod for your own back. You need what you need at any given stage of reducing - and forcing a reduction will only result in a flare of the inflammation and going up - rinse and repeat. And the more you do that, the harder it gets to reduce.

The lower you get, the slower you need to get. And you have to accept that now you have got this low - it is a patience game from here on. Rushing at it will get you nowhere - except maybe to a higher dose.

[Viv54 in reply to PMRpro]

That was me !! now i am just about to go down 1/2 a mg , so far so good . slowly is the key !

[alangg]

Just to echo DL's post above; if you are struggling to reduce, then use a very slow taper plan and a very small reduction in the size of the dose. A pill cutter helps; having a selection of 5mg and 1mg pills and cutting them in half gives you scope for very small drops in dosage.It worked for me and although it took nearly a year to get down from 6mg, I managed it without having to go back up at any point. I usually left 4 weeks between finishing one taper and starting the next just to be sure that I wasn't pushing my luck.

[Magictherabbit in reply to alangg]

Thanks for that …the gps really don’t know much at all about tapering and even the rheumatologist has only ever suggested going down a mg at a time …I find it quite confusing . Even though I have had to go up to 5 mgs I am still struggling in the morning with pain and stiffness .

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

How long have you been on 5mg? Can take up 7-10 days to get things back under control. Anything up to 2 weeks is okay and won’t stop you dropping back down to just above previous dose.

[Magictherabbit in reply to DorsetLady]

I’ve been on 5mgs for 2 weeks now …pain and stiffness generally wears off in the afternoon but mornings are difficult.

[PMRpro Ambassador in reply to Magictherabbit]

How early are you taking the pred? I take it it wasn't happening before?

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

As PMRpro says is it completely new issue and have you changed timing of taking Pred? You’ve only made a very small increase, if it’s a flare maybe you need more - unusal advice is to add 5mg to dose causing issues.

[Magictherabbit in reply to DorsetLady]

Interesting what you and PMRpro are saying…I’ve only ever taken my pred in the morning with breakfast ..about 7.30 which is what I was told at the beginning of this journey. So glad I’ve reached out to this forum

[PMRpro Ambassador in reply to Magictherabbit]

The shedding of the inflammatory substances in the body takes place at about 4-4.30am. The sooner you take the pred after that the less inflammation has been created and the less it has to do - taking it at 2am is the ideal, the inflammation never gets started and your mornings are better.

[Magictherabbit in reply to PMRpro]

Thanks for that information…something the drs never tell you

[PMRpro Ambassador in reply to Magictherabbit]

A lot of them probably don't know - they haven't seen the study or used Lodotra/Rayos which is a form of pred designed to be taken before bed but is released at 2am. If they haven't used it, they won't be aware of the difference it can make.

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

That works for many and is what is recommended in paperwork… and seems to have for you in the last.

Pred normally takes an hour or so to get into system so most feel a bit achy etc until that happens.

However the reason you may be struggling now is probably twofold as already mentioned -too low a dose (3mg) to last the day - and adrenals still stuttering.

You might think 3mg is a good enough dose for 4 years into PMR -and for some it may be, but not everyone.

As for Rheumy appointment -s/he may think you should be off Pred by now but unfortunately PMR doesn’t read the rule book! As many on here will testify…

..and it’s not because you don’t want to be off the drugs as some doctors seem to think.🤔

[Magictherabbit in reply to DorsetLady]

Thanks for all your advice…will take it all onboard.

[Grannymiaow]

I have 2.5mg tablets which snap neatly into two along their marked line, enabling my current dose of 4.75mgs.

[LemonZest11]

Hi Magictherabbit, what PMRpro and DorsetLady say about 2am pred it so true. I'm 4 years in and initially found the mornings hellish until around midday. Took the advice to take my pred dose at 2am and voile, everything changed. It doesn't have to be at 2am on the dot, a bit earlier or later is fine, when you get up for a pee. Take it with a couple of spoons of yoghurt and it goes down easily. The other thing is about your taper ... I reduce by 0.05mgs once below 5. You can cut 5 and 1 mgs to get what you need. I am currently taking a quarter of 5mgs, ie 1.25mg, and plan to stay here for a couple of months. If I flare, back to 5mgs for a week, 3, 2 and stay. It's a game of patience. If I get to 1mg, I might remain there for months. I have learnt from the experts here, you just have to listen to your body and be patient.

[PMRpro Ambassador in reply to LemonZest11]

I assume 0.50 LZ - though .05 would be nice ...

[LemonZest11 in reply to PMRpro]

Yes, yes, of course 🙈. I'm not good at maths!!!

[PMRpro Ambassador in reply to LemonZest11]

Hehe - I blame PMR dyslexia myself. the brain gets it right, the fingers slip up

[LemonZest11 in reply to PMRpro]

Love you PMRpro, you know!

[LemonZest11 in reply to LemonZest11]

Actually, that should have read a 0.25mg taper once below 5mgs. Sorry for the confusion!

[Cal-guy in reply to LemonZest11]

Thanks for this LemonZest11! I was diagnosed with PMR just over a year ago. Was started on 40mg pred and now (thanks to this forum!) down to 6mg and tapering. Will try dosing early am and report back. Love hearing stuff like this! Thanks to all and PMRpro and DorsetLady especially.

[Magictherabbit in reply to Cal-guy]

Thanks Lemon Zest for all your information and am going to try taking pred when I wake in the night . Cal-guy …you have done well to get down to 6mgs …have you tapered very slowly to get to that ?

[Cal-guy in reply to Magictherabbit]

Magic- I'm reducing .5mg every two/three weeks...just getting ready next week to take it to 5.5 mg (now how to accurately split those tiny 1mgs!) Seems to be working well: less puffy eyes...but.....I've got a lingering stiffness (due to inflammation) in left 3fingers (pinky, ring and middle) which hinders guitar playing. This due to pred or PMR? I'm leaning to pred as PMR hit my shoulders, hips and legs hard when it first appeared. Hand issue came after pred. Trying hard to find foods that don't flare inflammation now. Sorry for long response I know you only asked about tapering!

[PMRpro Ambassador in reply to Cal-guy]

Have you got 5mg tabs? Are they bigger and easier to cut? 2.5 plus how many 1s you need may be easier.

[Cal-guy in reply to PMRpro]

Yes I have 90tabs/prescription in 5 and 1mg sizes....So it's going to work for 5.5 to 5mg tapers....once I go sub 5...may get some 2.5mg sizes to assist being more accurate in my 'splicing' activities! Oh so fun right? Thanks for all you do for this forum PMRpro btw!

[LemonZest11 in reply to Cal-guy]

Hi Cal-guy, all the best with the rest of your taper and the night time doses, works so well for me. Just a word about the lower taper, I am reducing by 0.25mgs now I'm below 3. I got that wrong in the above post. You can split 5mg into quarters with a pill cutter, same with the 1mgs. I learnt this the hard way!

[LemonZest11 in reply to Magictherabbit]

I hope it works for you. Worth a try!