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Discussion Starter · #1 ·
I saw some research online, and was wondering if anyone had tried any micronized DHEA to control lupus flares?

Looks like it might be worth trying it out.
 

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Dhea

I took DHEA early on when I was first dx. I don't remember how long I took. I did take it for a few week but I am just not sure how long! At the time I did not seem to help me,but to be truthful I have been thinking about going back and rechecking the meds/and all natural that I took at the beginning because I am so super bad now. maybe that is what kept me from getting better/maybe not. I just don't know until I try again.However I do remember that DHEA did cause bad ACNE. The deep sore kind!!!I think it even says that on the label.BUt I am going to seek out some old stuff and give it another chance. GOOD LUCK!!!:)
 

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There's a great deal known about DHEA use in lupus treatment and we have several threads about it either on medications or complementary therapies. There has never been any suggestion that its use would be anything other than 'adjunctive' , that is in addition to other meds.

It is well known that a number of people with lupus have lower DHEA levels than healthy groups of the same age. Supplementing to a normal level can improve general well being and symptoms such as fatigue, in these cases.
Another important use is steroid sparing, helping reduce the amount of Prednisone needed and thus the long term side effects especially osteoporosis.

Unfortunately the FDA did not accept the results of the trial of the pharmaceutical version "Prestara" so it never assumed medicine status. This would have given an assured constant quality product that would be reimbursed by the health insurances. As far as I know further research has been abandoned.

It is worth noting that the sale of DHEA is forbidden in the UK and very possibly throughout western Europe. That's because it is considered a potent hormonal preparation whose long term side effects are largely unknown - various cancer risks in particular.

I had my DHEA levels tested in NYC and they were fine. I had a DEXA scan and my bones were fine and I don't take steroids. Both my GP and and lupus specialist were opposed to its use and I certainly wasn't going to start being my own guinea pig. The last thing I want is male secondary sexual characteristics - I can grow my own chin hairs, ta very much! My lupus is stable for the most part on anti malarials which have numerous remarkable other benefits apart from being disease modifying and reducing flares as well as no unknown long term side effects

In my opinion DHEA should be taken under medical supervision on prescription when there definite medical indications and must be obtained from a reliable compounding pharmacy where you can be sure of the quality and quantity in each dose. Not purchased online fromm commercial sites who take no responsibility for the consumer's welfare and sell medicinal items as if they were jelly babies.
Consumer tests of DHEA supplements bought in health food shops showed shockingly wide variations.
So the basic question has to be whether DHEA is indicated for the individual whether micronized or not.

Rene, I am rather concerned about you " seeking out some old stuff".
I know you are desperate, but do yourself the favour of asking your rheumy about it and please don't risk using old medicines of any sort. Good rheumies know about the potential role of DHEA and can advise, if it could help that particular patient.

Cheers
Clare
 

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Discussion Starter · #5 ·
Thanks for all the input. :) I'm new to the lupus community.
I will check with my doctor. Might be worth a shot I figure.

And, I think what Rene was referring to was to start using some of the treatments he started with in the beginning.
 
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