Stuck on two and a half mg.: Four years in from... - PMRGCAuk

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Stuck on two and a half mg.

Deemar profile image

Four years in from diagnosis and in the last year I have gone down, using the slow reduction method, to 21/2 mg from 5mg, half a mg at a time.

On Sunday the 9th September I started reducing to 2mg intending to take the next 2mg dose after 6 days on 21/2.

All was fine until Friday the 14th when I woke with a really stiff neck and shoulders. Legs and arms quite painful. Very tired too.

OK I thought, better not carry on reducing now.

On the following Wednesday I noticed a slight improvement and now I am back to where I was before.

So, could this be the result of just one half a mg less 5 days previously?

Should I try to reduce again or stay on 21/2 for the foreseeable future?

I shall be seeing my rheumatologist on Friday and will discuss with him but I don’t have a lot of faith in him!

13 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Yes 1/2mg does make a different, particularly as you get to very low levels.

I would say that, at the moment 2.5mg is what you body needs - maybe next week, next month it will be okay on 2mg.

I know it’s frustrating as you get near to the magical zero - but there’s no rush - you will get there one day.

If 2.5mg is what your body needs then take it - no issues at that low dose - many on here would love to be okay on that dose.

Don’t let your Rheumy pressurise you - you’re doing well, don’t jeopardise things now.

Deemar profile image
Deemar in reply to DorsetLady

Thanks for that. You confirm my thoughts. I shall stay on 21/2 for a while and then give it another try. No rush. If I had listened to my rheumatologist and not found you wonderful people I would have been off prend in a year! Goodness knows what would have happened !

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Deemar

You’d be back on it - again!

Hi, being very nearly four years into PMR, I can but endorse what Dorset Lady says. In January 2018, I was at 5.5mg daily; now I'm at 3mg, so, it's taken me all but nine months to get down by two and a half mgs.

Each time I've reduced by only a half mg, and nearly always I've noticed the difference. I've stayed at each level for some six to nine weeks.

As I get closer to zero, I seem to have to be more patient than ever!

Seems to be the nature of the beast.

Good luck

Paddy

Deemar profile image
Deemar in reply to Charlie1boy

Thanks Paddy. Yes I too have learned to be patient, not easy!

.5mg reduction is actually twenty per cent of your current dose so it can make a difference. Hang on say for a month or so, ensure you feel comfortable and try again.

PMRpro profile image
PMRproAmbassador

Give it a month and try again. It is such a low dose there really is no rush now.

Deemar profile image
Deemar in reply to PMRpro

I’m away for a week shortly so will wait till I’m back from the trip and on an even keel before I try again.

I reduced the Pred by 1 mg from 3 to 2 mg. ,l only tried a couple of times but it caused a flare.l have had to go up to 6 mgs., and really wish that l had stayed on 3 mg. lt will be a long time before l ever get back to that.l really did not think it would make a lot of difference ,but it has to be done very carefully,and l do not feel as well as l did before l lowered the dose. Best wishes ,l hope that you will be OK and everything will go well for you in the end.

Deemar profile image
Deemar in reply to Grants148

Thank you. I have taken advice from here and have been reducing by 1/2mg at a time since I was on 8.

As others have said that .5mg can make such a difference. The reaction means your body needs that extra .5 for now, stay on it until all symptoms have subsided and if it happens again stay a little longer, it doesn't matter at your current dose. I reduce once weekly at the moment and sometimes the symptoms don't settle so leave it two weeks. I've been down to 3mg previously but this time it isn't working as easily. I'm on 4.5mg trying to get to 4mg. It took me 4 months to reduce by .5mg to 4.5mg. Be confident with your Rheumie and tell him what works for you! ATB.

PS: I'm too 4 1/2yrs since diagnosis for GCA/PMR.

I've had PMR for 4 years now at 3 3/4mg

I tried 3 1/2 mg a few months ago but had a similar flare to you. I couldn't move my neck!! I went back to 5 mg for a couple of weeks and then back to 4 mg

I'm going to try 3 1/2 again but it's amazing that even reducing by 1/4 can cause a flare.

Everybody wants to reach club zero but maybe we have to accept that we'll always need a maintenance dose. At least it's very very low,

Good luck

PMRpro profile image
PMRproAmbassador in reply to Jankie

Years ago I wrote a post on another forum about "What a difference 1/2mg makes" - and that was over 2 days too!

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