DHEA curious...: Has anyone used this supplement to... - PMRGCAuk

PMRGCAuk

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DHEA curious...

christi48 profile image
20 Replies

Has anyone used this supplement to help with adrenal insufficiency?

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christi48 profile image
christi48
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20 Replies
piglette profile image
piglette

What is wrong with steroids? We are already taking them for PMR and GCA.

Bcol profile image
Bcol

Link below to the Mayo clinics take on this as a supplement. Basically don't.

mayoclinic.org/drugs-supple...

GrandmaPirate profile image
GrandmaPirate

Yes. When I was with PMR with prednisolone I was no more able to cycle uphill and told so my GP, who put me on DHEA 8mg/day and the tiredness decreased and with my bicycle I could go everywhere again. When pred was ultimately at 1 mg/day he prescribed me 4 mg/day of DHEA. A year ago we tried in August to discontinue DHEA and after a month I begged to prescribe DHEA again because of muscle tiredness. My rheumy agreed with the DHEA supplement as of the beginning. So I continue on pred 1mg/day and DHEA 4mg/day and yesterday I drove 37 km with my bike and walked 10 km with my dog. I daily do 50 mins of pilates, except on Sunday!

christi48 profile image
christi48 in reply to GrandmaPirate

Good for you! Keep up the good work! Thank you for your reply.

GrandmaPirate profile image
GrandmaPirate in reply to christi48

I forgot to mention that every 3-4 months blood analysis is done including DHEA and that in this way DHEA is monitored. Hope you will be able to be active too.

SnazzyD profile image
SnazzyD

Sorry, I’m lost. It increases circulating sex hormones doesn’t it? How does that help production of ACTH/Cortisol?

Gimme profile image
Gimme in reply to SnazzyD

omg, I'm long past needing sex hormones. I was told to rest with PMR. ;)

Gimme profile image
Gimme in reply to SnazzyD

Sorry, I lowered the tone there, but it made me giggle, and I need a laugh at this time of the day. 🤣

Pollyanna16 profile image
Pollyanna16

as someone with adrenal insufficiency I can understand your interest but reading the medical reports it seems far too risky. Sadly.

christi48 profile image
christi48 in reply to Pollyanna16

I'm going to discuss this with my doctor. Thank you.

PMRpro profile image
PMRproAmbassador

It has been discussed before and the conclusion then was better not - and it causes spots and things.

However - more important is that adrenal insufficiency is not a simple one-size-fits-all problem. It depends on WHY you have the problem.

DHEA may be useful in someone with primary adrenal insufficiency or Addison's disease where the body isn't producing any or not enough cortisol because there is a problem with the adrenal glands themselves (surgery, cancer, infections) and in that case they need replacement therapy because the glands aren't ever going to recover.

We have secondary adrenal insufficiency - we are taking pred and the body knows there is enough corticosteroid present so suppresses the production of more by the adrenal glands in the form of cortisol. As the dose of pred decreases, the adrenal glands should take up the slack and produce more and more until adrenal function is back to normal. The only thing that will encourage that is a low level of pred at midnight, signalling to the body it needs to produce cortisol in the early morning. DHEA suppresses the production of cortisol so may not be helpful in the recovery of normal adrenal function.

It isn't something I would consider taking - enough facial hair from pred apart from anything else!!

webmd.com/diet/dhea-supplem...

Gimme profile image
Gimme in reply to PMRpro

Thanks for that, I won't be doing that one then.

christi48 profile image
christi48 in reply to PMRpro

Thank you!

Luciejane profile image
Luciejane in reply to PMRpro

Hi pmr pro. I've had GCA for 3 years and finally down to 3.5mg and have normal bloods. Suspect GCA is in remission. However I've been diagnosed with adrenal insufficiency and told not to reduce further until I have another test next month. If the reading is the same then I'm to try a different cortisone that has to be taken 3 times a day. I was interested to read that taking a small amount of pred at midnight could help the adrenals to wake up. I take mine around 6am then I wake up around 8/9am. It's a struggle in the mornings and can sleep 10 hours ast night as well as needing naps in the day. Shall I take my 3.5 dose at midnight? Do you think it will help? Thank you

PMRpro profile image
PMRproAmbassador in reply to Luciejane

No - if you had read the rest of the thread you'd have seen that ISN'T what was meant. The important factor is that the blood level of pred is as low as possible at midnight - so taking your pred at or shortly after midnight allows the longest possible time for it to be excreted from the body. If you are taking 3.5mg at 6am, it should all be out of your system by midnight. That is the trigger for the body to produce its own corticosteroid, cortisol, in the morning.

I think it is premature to conclude you have adrenal insufficiency at 3.5mg - that is still quite enough to suppress recovery of the HPA axis - SnazzyD had rubbish results at that level, it recovered as she got lower. It can be a torrid period while you are waiting, no getting away from that.

Luciejane profile image
Luciejane in reply to PMRpro

Thanks for replying. I had the syncathen test and my endocrinologist told me my adrenals were not kicking in and not to further lower the dose as it would be dangerous. What would be the best time for me to take the steroids to encourage the adrenals to wake up? Thank you

PMRpro profile image
PMRproAmbassador in reply to Luciejane

As soon after midnight as practical. The reason your adrenals aren't kicking in is because you are taking more pred than will encourage it and it is a very slow process at this stage.

Just be aware - if you feel unwell with adrenal-related symptoms, take a dose of pred while you can and call 999 saying possible adrenal crisis. They can send an RRV (single crewed rapid response vehicle) as all it really needs urgently is an infusion of hydrocortisone and transport can then wait. I'm surprised the endo didn't issue a rescue kit.

Luciejane profile image
Luciejane in reply to PMRpro

Thank you. I think I understand re dose timing. I take the coated version which takes a couple of hours to kick in so I was mistakenly thinking to take the dose at 6am so that my body had cortisone in the system when it needed it.

PMRpro profile image
PMRproAmbassador in reply to Luciejane

The coated version actually takes more like 5 hours to get into the system - it has to travel to the other side of the stomach before it is absorbed at all. If you are on the enteric coated form of pred, you could take it immediately before bed and it won't release until the early morning so it will leave the blood level low at midnight and give a lot longer for the pred to leave the system.

Luciejane profile image
Luciejane in reply to PMRpro

Thank you, I will try that

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