tapering dosage

[SandyBoots]

Greetings,

Thanks again for all of your posts and insights. I started having symptoms in April that seemed to be very consistent with PMR and it took until 3 weeks ago to get my Rheumatologist and GP to concur with what I thought i had (PMR) since my ESR and CRP were in normal range. Started on 10 mg. and pain in shoulders, hips and thighs gone. i have been on the steroid now for 3 weeks.

The plan is to wean down 1 mg a month from 10 - does that seem reasonable?

Other question is i find i have trouble sleeping and a glass of wine with dinner seems to calm the jitteriness a bit and helps me relax. I did not read that having a glass of wine poses a problem with being on a steroid. Just wondering if anybody knows anything different.

Thank you

[SnazzyD]

Well it might be ok, but it is unlikely that you’ll be done and dusted in 10 months. You’ve started on a dose below the usual 15mg for PMR too. Are you symptom free? So, PMR is frustratingly not one of those conditions where you take a course that treats it and then you carry on with your life. Your body’s immune system, for whatever reason, is attacking certain blood vessels which starve the muscles of oxygen, causing pain. All the Pred does is keep the damaging inflammation at bay, while your body makes its mind up when to stop firing at its own troops. This takes a few years ordinarily and the idea is to reduce to the lowest level of Pred that keeps that inflammation at bay. If you go too fast, your inflammation will not be controlled and your symptoms will return. The idea is to either go slow enough so you never catch up with the lower limit and you reduce with your hopefully calming immune system, or you find the limit such that you can pinpoint with some accuracy what your lowest dose is so you can go back to the last dose you were ok on. I dropped at 0.5mg jumps at this level and took 6-8 weeks to do it. The risk of going too fast is that you might have to go back up higher than you need to. How long does it take? How long is a piece of string, but at least 2 years normally.

The other thing that can put a spanner in the works is life. Stress, illness, over doing it etc can also increase your autoimmune activity so no matter what your plan on paper is, the poor old body often begs to differ.

The other reason you might not be reducing at 1mg per month all the way to zero is that your adrenal function may not return at the same speed.

As per the wine, there is no direct contraindication but it depends on the person and of course how big your glass is.

[Blossom20 in reply to SnazzyD]

What a great reply! Says it all!

It is such an unpredictable state - even on the same dose of Pred you can feel ok one day and rubbish the next. Not easy for those of us who like to be in control!

[PMRpro Ambassador]

Well if it does I am in serious trouble!! Pre-pred, the best part of the day for me was after the glass of wine with dinner!

1mg per month is a start - 10mg is a very low starting dose and you may find you get stuck quite soon - you aren't heading relentlessly to zero, as Snazzy says, it doesn't work that way, you are looking for the lowest dose that gives the same result as the 10mg, That might turn out to be 9mg at present, or it might be much lower. You have to listen to your body and what your personal PMR requires.

[alangg]

I agree with the last two replies - take it slow! I was fortunate to to be able to reduce steadily but slowly over two and a half years without experiencing any flares, continuing to work in a reasonably physical job and regularly supporting the grape industry (along with the brewers and scottish distilleries).

Use a taper plan when reducing the dose so that your body doesn't have a sudden drop in steroid and stay on the new dose for 4 weeks before starting to reduce again.

Good luck!

[Loyd]

I started like you 18 months ago but at 15mg. Came down far too fast and had a seriously massive flair at 3mg. Had to go as high as 30mg to get relief - nightmare as having awful pred side affects I didn’t have at 15mg. Going down very slowly now. Be aware it’s not so easy. Good luck. Wine? I still enjoy mine!

[David4345]

Hi Sandy Boots.

The symptoms you describe are very similar to myself.

First diagnosed in mar 19, 20mg per day Prednisolone per day.

Put me on top within few days, remained on dosage for 6 mths then started reducing.

Have recently got down to 4mg with major problems as before.

Have just gone back up to 15mg which should put me right again.

I regularly have a drink in the evening every night 2 or maybe 3.

Don’t think a drink makes any difference although meds would differ,

Hope this info helps by the way I’m Now 77 and normally I can have a good quality of life,

Regard David T.