Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone!
I've seen a few mentions of DHEA on the list as of late. I thought I would post what the Lupus Foundation of America has to say about DHEA. I think that their statement is very important for the members of this list to read so I'm posting it below:
Test Results Released on DHEA Supplements
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ConsumerLab.com has issued a news release about an independent test conducted on dietary supplements containing the hormone dehydroepiandrosterone (DHEA). DHEA is available through grocery stores, health foods stores and other retail outlets.
The Lupus Foundation of America cautions people with lupus not to confuse these unregulated, non-prescription supplements with the prescription compound containing DHEA currently undergoing a clinical trial for patients with systemic lupus erythematosus.
The pharmaceutical preparation involved in the clinical trial being conducted by Genelabs Technologies, Inc. -- GL-701 or Prestara -- contains prasterone, the pharmaceutical generic designation for DHEA, as the active ingredient. (GL701 previously had the name of Aslera.) People with SLE generally have abnormally low levels of DHEA and studies have shown that hormonal influence may play a role in the development and progression of SLE.
In August, 2002, the U.S. Food and Drug Administration (FDA) issued an approvable letter for Prestara. The FDAs approval was contingent upon the successful completion of an additional clinical trial to provide sufficient evidence to confirm bone mineral density benefits.
The Lupus Foundation of America cautions lupus patients about self-medicating themselves using unregulated nutritional supplements containing DHEA without the knowledge or consent of their lupus doctor. As the ConsumerLab.com report suggests, the potency of these unregulated preparations can vary widely, even from levels published on the label. Only a physician who specializes and is experienced in treating lupus will have knowledge of whether DHEA would be a suitable therapy for an individual case of lupus, what dosage would be appropriate, or if the compound is having a beneficial or harmful effect on the patient.
LUPUS PATIENTS CAUTIONED ABOUT HORMONE SUPPLEMENT
-- ConsumerLab.com Releases DHEA Testing Results Online Today --
WHITE PLAINS, NY -- December 10, 2002 In its latest Product Review, ConsumerLab.com found that that 3 of the 17 DHEA (dehydroepiandrosterone) supplement products it tested contained less than their claimed amounts of this hormone -- one having less than one-fifth of what it claimed. DHEA (dehydroepiandrosterone) is useful in the treatment of systemic lupus erythematosus (SLE), a debilitating autoimmune disease that may affect as many 1.5 million Americans, according to the Lupus Foundation of America. DHEA is also used in treating adrenal failure and may be helpful in certain cases of male erectile dysfunction, depression, and osteoporosis. Although commonly touted as a way to reverse the effects of aging and enhance athletic performance, these effects have not been demonstrated in people.
ConsumerLab.com observed that one product boasted it was Pharmaceutical Quality and produced and packaged in [an] OTC approved facility despite having only 19% of the DHEA claimed. Another product with only 79% of its claimed DHEA stated that its raw material met USP standards. A third product contained only 84% of the DHEA claimed.
There is good evidence that DHEA can help lupus patients reduce the dose of traditional corticosteroid treatment and its debilitating side effects, said Tod Cooperman, M.D., President of ConsumerLab.com. The treatment of these patients, however, is jeopardized by unreliable DHEA products. A product with half of the expected strength, for example, may have no significant benefit. People should be cautious when choosing a brand.
A listing of all the products that passed the testing are now available at www.consumerlab.com along with additional information on buying and using DHEA products. Also available are results from 36 other Product Reviews of popular vitamins, supplements, and nutrition products. Additional reviews scheduled for release in coming months include probiotics, melatonin, and two supplements used for memory enhancement ginkgo biloba and huperzine A. ConsumerLab.com's Guide to Buying Vitamins and Supplements is scheduled for print publication in coming months.
ConsumerLab.com is a leading provider of consumer information and independent evaluations of products that affect health and nutrition. The company is privately held and based in White Plains, New York. It has no ownership from, or interest in, companies that manufacture, distribute, or sell consumer products.
I've seen a few mentions of DHEA on the list as of late. I thought I would post what the Lupus Foundation of America has to say about DHEA. I think that their statement is very important for the members of this list to read so I'm posting it below:
Test Results Released on DHEA Supplements
-
ConsumerLab.com has issued a news release about an independent test conducted on dietary supplements containing the hormone dehydroepiandrosterone (DHEA). DHEA is available through grocery stores, health foods stores and other retail outlets.
The Lupus Foundation of America cautions people with lupus not to confuse these unregulated, non-prescription supplements with the prescription compound containing DHEA currently undergoing a clinical trial for patients with systemic lupus erythematosus.
The pharmaceutical preparation involved in the clinical trial being conducted by Genelabs Technologies, Inc. -- GL-701 or Prestara -- contains prasterone, the pharmaceutical generic designation for DHEA, as the active ingredient. (GL701 previously had the name of Aslera.) People with SLE generally have abnormally low levels of DHEA and studies have shown that hormonal influence may play a role in the development and progression of SLE.
In August, 2002, the U.S. Food and Drug Administration (FDA) issued an approvable letter for Prestara. The FDAs approval was contingent upon the successful completion of an additional clinical trial to provide sufficient evidence to confirm bone mineral density benefits.
The Lupus Foundation of America cautions lupus patients about self-medicating themselves using unregulated nutritional supplements containing DHEA without the knowledge or consent of their lupus doctor. As the ConsumerLab.com report suggests, the potency of these unregulated preparations can vary widely, even from levels published on the label. Only a physician who specializes and is experienced in treating lupus will have knowledge of whether DHEA would be a suitable therapy for an individual case of lupus, what dosage would be appropriate, or if the compound is having a beneficial or harmful effect on the patient.
LUPUS PATIENTS CAUTIONED ABOUT HORMONE SUPPLEMENT
-- ConsumerLab.com Releases DHEA Testing Results Online Today --
WHITE PLAINS, NY -- December 10, 2002 In its latest Product Review, ConsumerLab.com found that that 3 of the 17 DHEA (dehydroepiandrosterone) supplement products it tested contained less than their claimed amounts of this hormone -- one having less than one-fifth of what it claimed. DHEA (dehydroepiandrosterone) is useful in the treatment of systemic lupus erythematosus (SLE), a debilitating autoimmune disease that may affect as many 1.5 million Americans, according to the Lupus Foundation of America. DHEA is also used in treating adrenal failure and may be helpful in certain cases of male erectile dysfunction, depression, and osteoporosis. Although commonly touted as a way to reverse the effects of aging and enhance athletic performance, these effects have not been demonstrated in people.
ConsumerLab.com observed that one product boasted it was Pharmaceutical Quality and produced and packaged in [an] OTC approved facility despite having only 19% of the DHEA claimed. Another product with only 79% of its claimed DHEA stated that its raw material met USP standards. A third product contained only 84% of the DHEA claimed.
There is good evidence that DHEA can help lupus patients reduce the dose of traditional corticosteroid treatment and its debilitating side effects, said Tod Cooperman, M.D., President of ConsumerLab.com. The treatment of these patients, however, is jeopardized by unreliable DHEA products. A product with half of the expected strength, for example, may have no significant benefit. People should be cautious when choosing a brand.
A listing of all the products that passed the testing are now available at www.consumerlab.com along with additional information on buying and using DHEA products. Also available are results from 36 other Product Reviews of popular vitamins, supplements, and nutrition products. Additional reviews scheduled for release in coming months include probiotics, melatonin, and two supplements used for memory enhancement ginkgo biloba and huperzine A. ConsumerLab.com's Guide to Buying Vitamins and Supplements is scheduled for print publication in coming months.
ConsumerLab.com is a leading provider of consumer information and independent evaluations of products that affect health and nutrition. The company is privately held and based in White Plains, New York. It has no ownership from, or interest in, companies that manufacture, distribute, or sell consumer products.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Thank you for posting this info....Very good to know and have the website for. I was always told by others that DHEA would be great for me to take (health food store owners) but never tried it. Now I wont be trying it for sure.
xoxo
Even though I have known of two people online with Lupus who have had dramatic wonderful results with high doses of DHEA, without having a doctor who really knows about this hormone, I personally think it's a terrible idea.
It's not because of quality, which is certainly something to consider. But it's because it increases the possibility of specifically breast cancer, among other cancers. Although some results say it helps ward off cancers, I have found that most sites that are reliable say it can cause cancer. So definitely, without close monitoring, I would not recommend it. Of course it can cause other problems too, like racing heart, etc.
Another two I wouldn't recommend and seem to be abused are melatonin and Gingko biloba. Melatonin has been considered bad for autoimmune diseases in some studies. It also, in some studies can cause infertility in both men and women. Gingko biloba, though I take it for it's anti-inflammatory affects as well as it helps my mental state, is also something to question. I take it with full knowledge of one study I read where it acts like a natural birth control. The study suggested the possibility that it could harm ovaries. Though I am in child-bearing age, I still take it because I feel its benefits outweigh the risks. Or at least, I feel that I'm comfortable with my research and decisions and feel it's probably not going to harm me, but hope that it doesn't, knowing maybe it will. Maybe that's stupid, but at least I'm aware of the possibilities.
Basically, just because companies tote something as being safe and can be found in lots of products, it's important to be aware that it might not be. Aspartame is another example of something that I feel is unsafe from studies I have read, but I do partake from time to time. you can't know everything or even if what you read can be trusted, but I think it's best to try and be as aware as possible.
Sorry for the very long rant!!
hugs,
Sarah
Im glad that you posted about the DHEA as well. Its always good to have more then one opinion when it comes to untraditional meds/supplements. Tracy had told me about melatonin a long time ago but I had never heard this before she told me about it. I dont think many people with lupus know that melatonin can actually cause harm to lupus patients, as well as other supplements. I know from my own experience that they absolutely can make you sick and flare. The more info we learn from eachother, the safer we will may be.
Happy holidays to all!!
Those are good points too. BTW, never take advice from someone working in a health food store. Although they could be knowledgable about vitamins, they don't know about lupus. And the majority of employees are mininum wage workers hired to sell what's on the shelves. It's never a good idea to listen to someone SELLING something as to its value. A lot of the health food/vitamins/etc. are covered on www.lupus.org.
I happened to have been prescribed DHEA years ago by a rheumy and had it made at a compounding pharmacy so that I knew the quality and exact quantity, but I did not find it to be helpful to me. It remains to be seen if it was harmful in the long run either.
Just remember, our bodies are not like the "general public's" and you never know what will trigger a flare so be really careful before taking anything OTC.
Tracy