Tapering: Might be a silly question, so apologies... - PMRGCAuk

PMRGCAuk

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Tapering

Nanatoo profile image
11 Replies

Might be a silly question, so apologies if it is, when slowly reducing prednisolone,are the adrenals being asked “to join the party” and if they aren’t, is that when you can get some feelings of fatigue etc while you wait for them to wake up. Is that why we taper slowly to give them time?

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Nanatoo profile image
Nanatoo
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11 Replies
SnazzyD profile image
SnazzyD

Yes. The only way they be persuaded them to come to the party is by keeping the body with not enough of the, ‘artificial cortisol’ Pred so it might trigger the body to start making its own cortisol. The slow taper is to tread the line between keeping just challenging the body and over doing it and causing an adrenal crash. Unfortunately until they do start working reliably, one feels horrible with a nothing in the tank feeling.

PMRpro profile image
PMRproAmbassador

Depends a bit what stage you are at. At higher doses you are tapering slowly to make the change in dose more comfortable and it also allows you to identify the lowest effective dose more accurately: at any stage even 1/2mg can be the difference between the dose being enough and not.

Once you are down to under 7mg or so, it is adrenal territory and the dose may not be quite enough now for the daily essential needs of the bodily functions. That is the point at which you hope the adrenals will start to produce a top-up to the ideal amount of corticosteroid. And as you get lower and lower you may feel it if the adrenals aren't quite keeping up. Some people never notice it, others are flattened by the lack.

piglette profile image
piglette

They are not being asked to join the party, but told they must join the party and sometimes they resent it and want to carry on sleeping, so they are forced to the party and resent it, which causes us to feel tired and yuck.

PMRpro profile image
PMRproAmbassador in reply to piglette

Love it!!!!

CamGina profile image
CamGina in reply to piglette

Yes, feeling tired and yuck sums it up! Currently on 4mg. I'd love someone to order them to come to the party!

marionofnorwich profile image
marionofnorwich in reply to piglette

I think it is more like requiring them to go back to work after the pary!

marionofnorwich profile image
marionofnorwich

Like an old friend that you replaced with a new friend and then realised you needed them after all. Understandable resentment! If only we could apologise and reason with them. Even a nice meal out and a bunch of flowers...

Bringonthemusic profile image
Bringonthemusic

I agree with SnazzyD. It is a struggle until the adrenals start working. The slow taper and understanding it takes time is the only way forward.

Freya32 profile image
Freya32

Nanatoo,I think the adrenals are the hosts of the party.

Without them it's a flop.

The secret is we are all so different that each must find the way that best suits.

If one feels too Yuk when reducing then go back up a wee bit say half a mg and then two weeks later reduce again.

You get there in the end...to the lowest dose you are comfortable with.

And hopefully the adrenals switch on again when required.

I am taking berberine and chromium as well as vit D with K, C and B vits.

Think the berberine helpful....eat twice a day, small amounts ....low carbs...

Reducing by I mg every two weeks.

Read you need to take preds when you wake in morning .so doing that.

It seems that naturally adrenals shove out cortisol in first few hours after waking....so guess mimicking that is right.

Some kind soul on here suggested take with yoghurt so I do that, add a few berries and seeds to the bio yogurt ...and that is breakfast.

Still got three dancing chins but face is getting a bit thinner and lost the buffaloes humps.

And such bliss to be free of the arthritis pain that was so crippling over last 20 yrs.

And got feeling back in those parts that were numb...at last.

Just have to be patient with this thing....

We get there in the end.

You will too.

Otermans profile image
Otermans

I had GCA for 21/2 years..started on 70 mg of prednisolone and was very

lucky to have an excellent rheumatologist, who was also a kind and understanding man. ( I came across several medical staff, who had never heard of GCA, which I found sad.) I had 1 relapse after a year and then reduced very slowly . I was on 1 mg for a long time and even had a knee replacement at 88 yrs. and took 1 mg. for 4 months after that. I stopped taking pred. over a year ago and though it saved my eyesight I found it to be a healing but also a terrible drug. I would urge you to reduce very slowly. Good Luck. Edit ..now 90 years !

musicalJ profile image
musicalJ

I have PMR and GCA and started on 60 mg prednisolone in February, reducing by 10 mg every 4 weeks. I was surprised and distressed to find that a drop from 20 to 15 mg prednisolone made me feel dreadful - not immediately, but after 6 days. After 10 days I talked to the doctor, who told me to go back up to 20 mg, then try reducing by 1 mg every 1-2 weeks once I felt stable. I felt better after going up to 20, but it took 3 weeks before I felt as good as I had before the reduction. I reduced by 1 mg 2 days ago and hope to reduce by another 1 mg after 10 days. I had been taking prednisolone after breakfast (about 8.40), but during the bad phase was getting very dizzy. As this is a symptom of prednisolone withdrawal I started taking prednisolone within 30 minutes of getting up, around 7.10. This seems to help, I have not been dizzy since starting to do that.

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