5 mg what happens next?: I’m about to decrease... - PMRGCAuk

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5 mg what happens next?

Eliza4 profile image
8 Replies

I’m about to decrease prednisone to 5 mg (been tapering from 60mg since May 2020 - GCA). I’ve been tapering 1mg every 2 weeks since 10 mg, generally without any problems.

I’m wondering what to expect from 5 mg on. Also can you tell me more about how I will find out if my adrenal glands are going to function normally?

I have a consultation with my doctor next week, and would like to be a bit more informed so I can ask the right questions

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SheffieldJane profile image
SheffieldJane

As you know you have reached the territory where your Adrenal system must start to produce the Cortisol that the body needs itself. To facilitate this transition it is helpful to taper very slowly, perhaps 1 mg or better 0.5 if you can cut your tablets ( not the gastric coated ones) each month. Symptoms you may experience include, extreme tiredness, erratic energy levels. I used to feel a bit sick at times.A Synacthen Test to see if yourAdrenal system is capable of producing your body’s requirements is most usefully done by an Endocrinologist when you are on about 3 mgs of Pred. I was given an emergency Hydrocortisone injection kit and instructions in case I experienced an Adrenal crisis. I observed the sick day rules that are in a pinned post to the right of your screen, kindly put there by Mrs Nails. Good luck!

Eliza4 profile image
Eliza4 in reply to SheffieldJane

Thank you, this is very helpful. I’m studying the information including the sick day rules now.

baxternoni profile image
baxternoni in reply to SheffieldJane

My endocrinologist tapered my prednisone very slowly. She did blood work every month to see how my adrenal system was doing. I even was tapered to .5 mg before I was finally given the ok to quit as my system was functioning well.

SheffieldJane profile image
SheffieldJane in reply to baxternoni

That sounds perfect. Good Endo.!

PMRpro profile image
PMRproAmbassador

I'd suggest dropping the reduction steps to 1/2mg and only once a month - which should make the return of adrenal function easier. Top endocrinologists have recommended for some years that a reduction step shouldn't be more than 10% of the current dose.

After such a short time it is to be hoped that your adrenals will feel disposed to wake up and perform their duty without too much protest. The most likely effect of them being sluggish is fatigue and that is a sign to slow down a bit. One rheumy who is very good with PMR/GCA likes to keep patients at 5mg for up to 9 months - he finds that helps the adrenal function catch up and the rest of the journey is easier. OTOH, if you are able to get to 3mg without problems and then persuade your GP/rheumy to order at least a 9am basal cortisol level after not taking pred for the previous 24 hours and even better a synacthen test, that is even better. The synacthen lest will show if your adrenal glands are capable of producing cortisol - but it doesn't mean they actually do so as the feedback system involves a range of steps that all have to work in sync.

You have been very lucky - to get so low in well under a year is very fast. But be aware that even with such a good journey, GCA can and does resurge in the first 18 months.

Eliza4 profile image
Eliza4 in reply to PMRpro

Thank you for this information- it’s very informative and helpful. I feel better informed for my consultation next week. Also, a timely reminder to take things one step at a time.

Titchyj profile image
Titchyj

Hi, I don’t have your problems, but I have been on Prednisolone for many years, down to a maintenance dose of 7.5 and supposedly for life at this dose. Now my new respiratory consultant wants me to discontinue steroids altogether, since June last year I have been reducing slowly, but have had to increase a few times due to illness. It was suggested 1mg every 8 weeks, I have now got to 4.5 after having a Synacthen test last month when I was on 5mg. Consultant wants me to get to 4 mg by May when they will do another Synacthen test so long as I don’t have any bad reactions with this reduction, it’s only been 3 days so far. The only thing I have noticed is the worsening of fatigue and and drop off to sleep at any time. You have done very well so far, but I would reduce by 1/2 mg from now and see how you feel. Ask GP for a Synacthen test to see how your Adrenal glands are doing and if you do feel ill I would contact GP immediately.Good luck

Jan

Eliza4 profile image
Eliza4 in reply to Titchyj

Thank you

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