View Full Version : keto-DHEA anyone? if anyone has tried it let me know!!!

03-16-2004, 06:26 PM
anyone try DHEA?..its a precursor of hormones--natural substance that maybe can suppress lupus sy. in some---FDA is currently checking it out--anyone take it?..im scared of potential side-effects-masculinization etc....anyone have any experience with it?
btw Im in Philly. PA

Sandra S, Singer
03-19-2004, 03:36 PM
I've been taking DHEA for about 2 years. I can't say that I've seen any improvement, but my condition hasn't become any worse (that is, require any more prednisone to control it), so thats the positive side of it. My doctor thinks it will help alleviate the osteoporosis too. It has "hormonal" side effects - oily skin, acne, and, shall we say, more interest in sex (whereas most drugs we take kill the sex drive!). Nothing I would call masculinization, though.


03-30-2004, 10:51 AM
I have never heard of this before - is it really new? The side effects don't sound too bad to me! I get the oily skin and acne just from the Prednisone - it would be nice if it included increased interest in sex, too! But, Prednisone is too mean to give any good side effects. What does DHEA stand for? If it's not FDA approved, how are you getting it? Are you in a study or something?


Sandra S, Singer
03-30-2004, 01:02 PM
It's sold as a dietary supplement in the vitamin sections of drug stores and in GNC type places. However, my doctor doesn't trust those - he worries about whether the doses are accurate, and the quality of the material, so he has given me a prescription for it. Only some pharmacists sell it - and then only those who do their own compounding. I take 200 mg a day, at a cost of about $1 per pill (this is a good price!) I don't know what the cost is for the over-the counter DHEA.

The full name is dehydroxepiandosterone.


04-11-2004, 03:11 AM
I didn't know that the pharmacist will make it for you--thats great- I will get it prescribed- as your doc says-otc supplements aren't controlled and some makers are bogus.
BTW, did you notice any hair loss from it?..thats the side effect im scared of as like all lupies I obsess over my hair.

I think also you can get blood levels drawn of your own DHEA--which Im planning to do before I start on it to see if Im deficient.

08-30-2004, 06:11 PM
hi all
i took one bottle's worth. that's what was recommended to me. had no bad side effects and i think it helped control my weight.

08-30-2004, 09:46 PM
My doc has been wanting me to get on DHEA for some time now and it is difficult to find in Canada but I am now taking DHEA and have noticed an increase sex drive and sensitivity during sex which is always good!

I have noticed it is good for mood elevation and some energy. I would not say it's a miracle drug or anything but I have noticed some positive effects.

I'm not thrilled about the oily skin and acne myself and am currently experimenting with products that can help attack my breakouts.

I like it though!

08-31-2004, 12:45 PM
i only took DHEA for one bottle's worth b4ecause it is supposed to increase your risk of cancer.
tempted to go back on it because i have NO libido.
i've gone back to taking fish oil and a, now able to do just great mood-wise with 10mg of paxil ( a very low dose) and the fish oil daily.

08-31-2004, 12:52 PM

It's always nice to have some natural elements to our healthcare. I find the DHEA much better then the actual Testosterone they had me on before and I stopped it and my doc wasn't thrilled with me being on it so it's nice to find an alternative.

I also take fish oils and other natural suppliments. I have found this vitamin company in Canada called Alive that their Super One Plus vitamin and mineral tablet has such a great balance of B and others that it helps boost my energy and it's delayed release so you get some effect throughout the day, without it bothering my sensitive stomach as well.

What else do you take that helps?


08-31-2004, 04:32 PM
here's what I'm taking hese day:
lisnipril (Rx for blood pressue)
paxil 1mg (anti depressant, low dose)

natural stuff:
a probiotic multi-viatmin (pre-digested by yeast- breaks down easily)
2 caps milk thistle to detox my liver from all the drugs from before
digestive enzyme (Udo's brand is good, as is enymedica) with every meal
fish oil

i also use a progesterone cream to balance my hormones, as I've had menstrual issues with the lupus. (18 months no period then 6 weeks of a gushing constant period, fixed by a prescription and some vitamin A)

i am also taking a tsp of "Just Barley" (barley greens) in water every day, which seems ot be helping LOTS. my chronic neck and shoulder/ upper back pain has totally disappeared since taking this (shhhh don't let it hear me i don't want the pain to return!!!) :o

2 years ago i was on 9 drugs and chemo, wearing compression hose and walking with a cane. so i think i've come really far and that the alternative medcine has had much to do iwth it.

08-31-2004, 04:47 PM
without Udo's I'm in the hospital unable to digest my food. Udo's Digestive Enzymes are fantastic.

I am on chemo but I do a nice balance between natural and medical and it's giving me more quality of life for sure. I have a whole regime of natural and it's been great. I'm glad to see more people seeking some natural solutions. I am very lucky that my doctor is a big believer is natural solutions.

Ginger tablets have helped my nausea. Pure cranberry tablets, DHEA rather then testosterone, Super One Plus vitamins, glucosamine, vitamin E, Udo's digestive, fish oils...

I have managed to stay off Prednisone for 2 years because of my regime and that was key for me as the Prednisone was brutal and I have suffered so many effects from Prednisone use.

08-31-2004, 05:35 PM
Amen to that guppie!
i've been off prednisone fora year and 4 months and am presently doing pretty well.
i read in the huge gray book "Alternative medicine" that 100% of lupus pts have food allergies and low stomach acid, so I had food allergy tests and have been taking the enzymes and stay away from milk, and go easy on the wheat.

i wish all the regular doctors would discussthese kinds of things. how are you supposed to get stronger if you can't digest food?
they're starting to come around, some of them, and that's refreshing.
i had one rheum fire me because she didn't like me questioning her "authority" by bringing in articles, talking about alternative medicine, etc. i was going to fire her that same day :wink:

08-31-2004, 06:40 PM
That's so funny about getting "fired" by a Rheumy"! Sounds like it was a good call. I have to say that I also love my Naturopath, because some of them can be just as anti-"the other side" as Western Medicine doctors! Plus, she does my acupuncture, too, which makes it nice not to have to go to yet another health practitioner!


08-31-2004, 10:57 PM
hey why does it say "tadpole" under my name?

09-01-2004, 06:13 PM
Um, I think it has to do with how many posts you've made. I think you move from newbie to guppie to tadpole? I just noticed mine changed recently, too.

Since we're listing all our natural therapies, I'm taking:

Cellcept 2000mg
Lisinopril 40 mg
Prevacid 30 mg
Prednisone 10 mg (Yeah! Was on 30 mg!)

Acupuncure every 2-3 weeks
Color therapy every 2-3 weeks
Milk Thistle, Dandelion Root, and Turmeric
Calcium Citrate w/ Vitamin D


09-26-2004, 11:41 PM
still doing the DHEA - sex drive thing is fantastic and my mood is quite good. The only thing - the oily skin and breakouts. I have cut down my dosage to try to curb this side effect, don't like that.

That has helped a bit - do you know of anything to help with the oily skin related to DHEA?

I still really like the DHEA and love the sex drive and feeling of well-being it does tend to give.