Reducing

[jaycee444]

We are told we should not be reducing relentlessly to zero but to a dose where we feel comfortable and know o go lower would cause problems. When we reach this optimal dose how long should we stay there before attempting to reduce again?

[DorsetLady PMRGCAuk volunteer]

Sensible to reduce monthly - whatever dose you are on. But remember the lower you get you may need to address how much you reduce-

so on higher single figures maybe 0.5mg rather than 1mg a time.

[jaycee444 in reply to DorsetLady]

Yes but if one is already reducing monthly even at 0,5mg and keep hitting a brick wall as we reduce then surely we have to stay longer at the optimal dose?

[HeronNS in reply to jaycee444]

Are you tapering overnight from one dose to the next? In that case you'd stay, as DL suggests, for one month and then try again. If you're using a slow taper where you gradually introduce the new dose it is sometimes quite possible to carry on directly to the next taper if you are feeling well. In no case should a new taper be started before you are feeling as well at the end of the current taper as you did at the beginning. If you are using a slow taper and keep hitting a brick wall then advice usually is to stay where you are, or I should say at the lowest dose where you feel well, then when trying again taper even more slowly.

[DorsetLady PMRGCAuk volunteer in reply to jaycee444]

Mmm, ....obviously in your case whatever dose you are on at the moment is the lowest you can achieve. Won’t be for ever, but it is for now.

You’ll just have to try it every month or so until you can get lower.

It will happen - one day.

[Liby57 in reply to jaycee444]

It might not be a brick wall rather withdrawal symptoms until your adrenal gland adjusts to the lower dose which can take a couple of weeks in between drops.

[PMRpro Ambassador in reply to Liby57]

After long term pred it can take considerably more than a couple of weeks to adjust at each taper step

[Liby57 in reply to jaycee444]

prednisonepharmacist.com/si...

[PMRpro Ambassador]

I tend to suggest sitting there for a couple of months and then try a slow 1/2mg drop and see how it goes - but never tempt fate if it doesn't feel right. You have to keep trying or you would never get to zero but you shouldn't push it. Often using one of the slowed tapers we go on about for a 1/2mg drop will sneak you down much lower than you first thought,

[jaycee444 in reply to PMRpro]

Okay thanks for your advice. I’m not in a good place at the moment having had 2 flares in the course of 4 months and cant at the moment seem to get back on track in spite of following the advice given. I am in pain but nothing like it was originally so although I could possibly live with it I was pain free when I first started taking Pred and have been so up to last December. Not been completely pain free since so not really happy with the situation knowing Ive been better.

[PMRpro Ambassador in reply to jaycee444]

So what dose were you at in December that kept you pain-free? I see - 8.5mg, and what did you do then? Once you had pain you should have immediately returned to the previous dose and stuck there for 2 or 3 months before trying again. And if 9mg didn't cut it immediately you should then have tried a week of 9+5mg before dropping back to 9mg to see if 9mmg really was enough. Half a mg can make a big difference - unless you have let a lot of inflammation build up and then you need some days of more.

But it isn't always the reduction that bring on a flare - sometimes the disease activity can increase and when that happens you may need a higher dose.

[HeronNS]

When did you start taking pred? Tapering really is a very slow process and it can take a year or two to achieve that "lowest best dose".

[jaycee444 in reply to HeronNS]

May 2019 at 15mg so two years now and pain free till December last year when at 8.5mg started to get a lot of pain again and I was following DSNS at the time .

[HeronNS in reply to jaycee444]

Oh that is so frustrating, isn't it? I actually got to zero last year about this time after the world's slowest taper. Now I'm usually at 7 but have needed the occasional 10 mg so I completely understand your feelings! I guess PMR really does wax and wane, and I really think the trying time in which we are now living is having a negative effect on us.

[11541stella]

Hi Jaycee, I can only tell you my experience - after 5 years with PMR. In the first couple of years I tended to yo-yo, until I got the hang of really listening to what my body was telling me I needed. Since then I've tapered very slowly, no more than 0.5mg a time and latterly over a 7 week cycle. It's often been tempting to push to go a bit quicker but that really has proved counter productive for me.

As an additional stress, I always felt I somehow had to justify to my GP my continuing need for repeat prescriptions, though after the first couple of years she pretty much went along with how I was handling it. Last year I left the UK (thanks, brexit!) and found that here it's considered that PMR doesn't leave but goes into remission - so no determination that we will all get to zero dose. Although I would probably have been distressed about that in the early days, it does remove pressure and the unwarranted sense of guilt that I think some of us feel for not getting well.

I've rambled on I know - all I really needed to say was listen to your body and try to be kind to yourself and patient!

[jaycee444 in reply to 11541stella]

Thank you Stella. I agree there is additional stress from feeling somehow to blame that we are not able to reduce as GPs would like. I am actually lucky that my GP is very good but I also have a Rheumatologist who wants me to reduce ASAP. I do find that it doesn’t help having that worry as well.

[Lochy in reply to 11541stella]

Totally agree Stella. Still don’t think I’m good enough at listening to my body after 6 years of this! Also have this deep seated guilt that I’m not able to reduce fast enough and that I’m ‘ill’ Wish I could shake that feeling off but it’s not so easy when people still think I look really well!!!!

[PMRpro Ambassador in reply to 11541stella]

Where do you live now? I, too, an a Brexile but have lived here for about 10 years now. I looked on your profile but you haven't told us anything It is the same here in northern Italy - they accept PMR does as it likes and many patients are on low dose pred for a long time.

[11541stella in reply to PMRpro]

I’m in Norway, and very glad to be here - I just wouldn’t have chosen to move in a pandemic! However, that’s we had to do if we wanted preserve our pensions. Previously we’d been lucky enough to be able to divide our time fairly freely between the two countries.

I know I should complete my profile but I have a (perhaps not totally rational) aversion to putting info online!

[PMRpro Ambassador in reply to 11541stella]

Oh it's just absolute basics we like to see - simply to save us giving a load of advice that would work in the UK but is a total waste of time anywhere else! And an outline of pred dose and a timeline really helps, especially if there have been problems.

We've been limited to 90 days in the UK a year since we moved here - not quite sure if I could face that long ...

[11541stella in reply to PMRpro]

Thanks, makes sense and will do. Your last comment made me laugh - feel just the same! 😏 It’s all very sad though, was a country I was fond of!

[PMRpro Ambassador in reply to 11541stella]

What region do you hail from in the UK? I last lived in Durham but couldn't go back permanently.

[Rugger]

My Rheumatologist, who is a 'name' in the field of PMR & GCA has kept me on 5mg for what soon will be 7 months! ('Relapsing' PMR since 2016, GCA-LVV since 2019 and on Tocilizumab for the past year.)

We need what we need for as long as we need it!