Weaning steroids

Hello, thank you for having me. I don’t have PMRGC but I am experimenting with steroids for adrenal fatigue/insufficiency and just wanted to ask a question -

I have been taking 25mg of steroids for 6 days: waking 10mg, noon 7.5mg, PM 5mg, bedtime 2.5mg

I am nervous about developing adrenal shut down entirely and read that if I keep doses before 1pm I can wake the adrenals up more easily later on. I want to wean off the post 1pm doses, as I’ve been on steroids for 2 weeks now will I need to wean or can I just stop the post 1pm dose now? I don’t want to risk any upset/crisis.

Thank you 🙂

[SnazzyD]

The first questions are, why you are on steroids? How long have you been on them for? Adrenal function shuts down if there is more of the artificial steroid than the body needs for a long period, usually about 3 weeks. Any steroid you add in will mean the adrenal glands will reduce their production as a result. It is worth remembering that prednisolone is more potent than the body’s own cortisol so it isn’t like for like. If you are taking steroids to counteract adrenal fatigue, as it sounds like you are (I may have interpreted it incorrectly) there’s nothing that would induce me to do that. Extra steroid doesn’t pep anything up, it just encourages the adrenal glands to shut down more of its production because the Pred takes cortisol’s place.

[Hidden in reply to SnazzyD]

I am on steroids because I have borderline adrenal insufficiency, but we don’t know why, although we think it’s due to prolonged hypothyroidism. Without enough cortisol I cannot make use of my thyroid hormone, I do have hashimoto’s. I failed to make very much cortisol in a SST test, but my ACTH is low in range so it’s not clear secondary or primary. I am following a protocol by Dr Barry Peatfield who says 8 weeks of HC use can allow adrenals to “rest,” and let me metabolise my thyroid hormone which should in turn improve my own adrenal output. I know others who have done this successfully, but they didn’t take their dose past 1pm, other sources say it’s OK to take it past 1pm and different consultants I have been advised by say different things.

If 3 weeks is the cut off will I be able to drop down on the steroid after 1pm without issue? I should add I take hydrocortisone, not pred.

Thank you for your help 🙂

I should add I am not taking what you say as medical advice, I am just collecting opinions and thoughts from everyone (including doctors, but also patients and people who understand long term steroid use) to make a decision for myself.

[SnazzyD in reply to Hidden]

Sadly, those on this forum use steroids in a different a way to how you’re using them. Our secondary adrenal insufficiency isn’t treated with your kind of approach since we are trying to get them out of ‘resting’ due to prolonged dosing above 10mg. This means slow and sustained reduction to trigger the adrenal axis. There are those with concurrent thyroid issues here, so perhaps they might comment. We do recognise the familiar story of medical practitioners disagreeing with approaches and the stress that can cause!

[Hidden in reply to SnazzyD]

I do know that. Maybe I shouldn’t have shared my background. Ultimately I’m asking how long someone can be on steroids for before it suppressing production. I think you said 3 weeks, thanks for sharing that that’s helpful 😊

[SnazzyD in reply to Hidden]

I am a bit concerned that Dr Peatfield was struck off and Paul Robinson is not medically trained though he does have a book endorsed by Thyroid UK. Have you had advice from a practicing endocrinologist recently?

Also, I said three weeks (above 10mg) but less or more is enough for some people to have an effect. It isn’t exact unfortunately.

[Hidden in reply to SnazzyD]

I do not take anything by Paul Robinson, I took advice from him 2 years ago and he sent me into an adrenal crisis.

Yes, Barry Peatfield was struck off for giving his patients NDT & T3, which is exactly what thyroid patients actually need. I trust him far more than I do my GP. Yes I have just spoken to my endo who is utterly useless (no big surprise) and I have a private GP who has said something different so I just like collecting opinions from people who actually know what it means to live on steroids. Most patients know more than their doctors about something that affects them everyday. But I will not take what you say as gospel, thank you for sharing that nugget 😊

[GOOD_GRIEF]

Take your medications as prescribed unless you discuss your issues/concerns with your medical team ad come to a treatment plan.

[Hidden in reply to GOOD_GRIEF]

As I say in my post, I am getting conflicting advice from my “medical team.”

[GOOD_GRIEF in reply to Hidden]

Then question them more closely about their opinions and report that you're getting conflicting advice. Have each of them justify their positions.

[Sophiestree]

I'm assuming you after on the ThyroidUK group on here. They might be able to help more. They seem as knowledgeable in their field as people here are about PMRGCA.

[Hidden in reply to Sophiestree]

yes ofc, thank you. I have gathered their opinions too but only a few of them have been on long term HC and I know this community has great insights on long term steroid use/weaning.

[Purpleazalia]

There are very few people on this forum who have experience of HC which I believe is shorter acting than pred and a different 'pred-equivalent' strength.

You might find the general info in our pinned posts FAQS of interest. This one for example

healthunlocked.com/pmrgcauk...

(it also has a link to 'reducing steroids and activating the adrenal glands')

Good luck, I hope your experiment has the desired outcome for you.

[Hidden in reply to Purpleazalia]

thank you! X

[PMRpro Ambassador]

It doesn't matter what form of corticosteroid you are taking or why, more than the equivalent of about 10mg pred/40mg hydrocortisone for more than a couple of weeks will suppress your body's own natural production. It is like your central heating boiler and a wood burning stove in the room the thermostat is in. While the wood burning stove (parallel expogenous steroid, the tablets) is producing heat, the thermostat will keep the boiler from producing more heat.

As a physiologist, I cannot see how putting you on steroid tablets will contribute to your adrenals waking up after a few weeks because they have "had a rest". It doesn't work like that. There are a lot of different steps involved - just like driving a car, Just because you fill up the fuel tank won't make it go better if the battery is flat.

[Hidden in reply to PMRpro]

thanks for your thoughts I appreciate that. However I have spoken to many people and read a number of books where this has been done. A temporary use of steroids to augment thyroid hormone metabolism that in turn supports adrenal function to improve, it is all about mending the HPA axis feedback so I feel happy with my own plan but I respect your advice 🙂 I am in my own particular situation, where my adrenal insufficiency is likely a product of prolonged hypothyroidism, so I am following a very specific protocol.

40mg a day I would never do, so that is really helpful to know! I have decided to not take any past 1pm and wean quite quickly back down to 15mg of HC and maybe use ACE to help myself get there.

Thank you 🙂

[PMRpro Ambassador in reply to Hidden]

That is 40mg/day HYDROCORTISONE, the equivalent to 10mg prednisone - 15mg HC is a very low dose, about just under 4mg pred.

[Hidden in reply to PMRpro]

yes I understood 🙂

[ColdBanana]

Are you still taking HC? Would be interested to know how you're getting on with it and how it feels. thanks