Getting off prednisone.: Been on pred since 3/201... - PMRGCAuk

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Getting off prednisone.

Aleish profile image
9 Replies

Been on pred since 3/2017. I have been trying to get off of prednisone and I am using an endocrinologist. I feel like she is milking this to make more money. I am down to 2 mg prednisone for a while now and I really want to stop. She is only going by cortisol levels in the morning. I was under the impression you had to do the test that you take the blood at 8 AM and Back in the body and then do it again in the afternoon to really know if my adrenals are OK to get off of this nasty drug.

What testing is Required to get off of prednisone ASAP?

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Aleish profile image
Aleish
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9 Replies
Kendrew profile image
Kendrew

Hi Aleish. I can't advise you on the testing but I can tell you that there's no 'quick' way of stopping taking pred. The last 5mg are probably the hardest and require slow, steady tapering to allow your adrenals to fire up effectively and start functioning again independently. There is no quick fix! Believe me, if there was, we'd all be taking advantage of it. I do know that it's also quite difficult to know for sure and with any reliable accuracy just how efficiently the adrenals are actually working from the tests currently available. How you're feeling and the symptoms you're experiencing are equally important as indicators for this. It's very frustrating but patience really is the key as this last stage of tapering is critical and requires very careful management.

I wish you all the best though for an eventual and successful outcome.

123-go profile image
123-go in reply toKendrew

Well said, Kendre. Kendrew!!🙄

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

“I am down to 2 mg prednisone for a while now and I really want to stop.”

Need a bit more info to help….

What have you done to try and get below 2mg?

And what happens when you do try?

Have you used a slower tapering plan?

Why do you think your adrenals need checking?

If your GCA or PMR is still active, then you may still need 2mg.

PMRpro profile image
PMRproAmbassador

Basal cortisol levels are quite informative about the state of your adrenal function for more than half of patients. The synacthen test won't tell you any more except whether your adrenals are able to produce cortisol, not whether they are doing so reliably.

It also isn't just the production of cortisol at this stage - it is also whether the underlying cause of the PMR/GCA has burnt out. Even as little as 1/2mg can be enough to manage the inflammation.

Longtimer profile image
Longtimer in reply toPMRpro

I just wish I was able to see an Endo....Max has tried in the past, but they say with a reading of 92, it`s adrenal insufficiency so no need to see me.. I am thinking of paying privately, hadn`t left the house for 3 weeks, so weak, OH took me to see a friend yesterday, only 2 hours, last night woke up shaking, so fatigued. and very low.....never felt so ill for along time....I`m hoping maybe they can prescribe HC....my family and friends can`t believe there is no treatment as such....and this is at 7mg!.....I might as well drop to 5mg anyway, don`t think I could feel any worse!....then maybe the Endo would see me....

PMRnewbie2017 profile image
PMRnewbie2017

And it isn't only the adrenal cortex that that has to function. The whole HPA axis has to swing into action too. That's the Hypothalamus and the Pituitary and the Adrenal cortex all talking to eachother, consistently with no hiccups. This is another reason why it takes so long to get off Pred and why we get different issues to cope with on the way.

Longtimer profile image
Longtimer in reply toPMRnewbie2017

Certainly do!....

PMRpro profile image
PMRproAmbassador in reply toPMRnewbie2017

Exactly ...

Theziggy profile image
Theziggy

Professor Dasgupta keeps a lot of his patients on 2 mg for a long time

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