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Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/2/2007 5:50 PM (GMT -7)   
I keep hearing about all the research done on Lupus patients taking DHEA. Mine was low. I am going to take a endo doc in am. I was just wondering if anyone takes DHEA? And if you do have you had good results??
 
Melissa
 
 
Dx: UCTD,Raynaud's,iron deficientcy anemia
Rx: Multi-rec folic, Mobic, Plaquenil


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/2/2007 7:10 PM (GMT -7)   
Hi Melissa,
I'm glad you posted this because I"m wondering about this too. I go to an endo site where a lot of people take it , run by Mary Shomon and I notice it most I think with people with Adrenal problems, I think, in conjunction with cortisol stuff. Many people seem to have it prescribed at a given dosage. My understanding is that it is strong for an unregulated supplement. I plan to ask my endo about it as my ACTH was low and some other stuff messed up. I have hashis as well. Actually I meet the criteria for polyendocrine dysfunction and it seems that a lot of other people on there have multiple endocrine problems as well. You might try there as well, there's some pretty knowledgeable people, I know Mary has written several books. I've always been concerned about over-the-counter supplements because they often aren't consistent in the amount of active ingredient. I think alternative doctors might have special formulations they give people, don't know.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/2/2007 7:26 PM (GMT -7)   
Hmmm.... I know they checked my ACTH too.....I wonder what that was. I will have to check!
Dx: UCTD,Raynaud's,iron deficientcy anemia
Rx: Multi-rec folic, Mobic, Plaquenil


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/2/2007 8:05 PM (GMT -7)   
Years before my fatigue was significant enough for my doctors to take it seriously, I read about and tried DHEA. I didn't notice any difference at that time.

However, there are at least 2 things that might have affected my results -- maybe my fatigue was insignificant enough to notice any improvement, and maybe today's DHEA is different than that available in the mid-90's.

I'm interested to see what everyone finds out about this.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/4/2007 12:03 PM (GMT -7)   
Hi all just thought I would give an update on what the endo doc said, and bump this up to the top since no one answered. Maybe no one takes it. Anyhow I told her how if I do have Lupus I know that DHEA runs low in Lupus patients. I asked her thoughts on starting a supplement. She said that she did not think it was a good idea. Even though she feels that I do have Lupus, she did not think it was a good idea. Even with a definate diagnosis there is so much literature for and against DHEA. She said at this time there is not enough research for her to feel safe starting me on it.

Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia
Rx: Multi-rec folic, Mobic, Plaquenil


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/4/2007 12:07 PM (GMT -7)   
Melissa, sorry, but I don't know what DHEA is. Perhaps you can elaborate. Thanks. Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 5/4/2007 4:25 PM (GMT -7)   

Melissa,

I'm with Pattylatty.  I dont know what DHEA is either but would be very interested to learn more.

ocean


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/5/2007 11:05 AM (GMT -7)   
DHEA is a hormone. There is a synthetic for you can take, I know alot of body builders take it too, Hulk Hogan talks about it on his show sometimes. Thats about all I really know about. Type DHEA and Lupus in GOOGLE and look at all the stuff that pops up!
Dx: UCTD,Raynaud's,iron deficientcy anemia
Rx: Multi-rec folic, Mobic, Plaquenil


Lula2ya
Regular Member


Date Joined Aug 2006
Total Posts : 50
   Posted 5/5/2007 4:59 PM (GMT -7)   
Hi.. I just wanted to put in my 2cents here. I've read a lot about DHEA and it seems that it does help Lupus patients. The thing is you have to take a lot. Some people are very leery of it though since it is a hormone and it can feed hormone caused cancers. I was told by my doctor to go ahead and try it but to be honest I've been too chicken to do it because i really don't know how much to take. I was also told by someone that you should know what your DHEA level is before you take it so that you don't take too much. I'm very cautious because I have enough problems... but One day I'll get up the nerve.
Lu

Dx; MCTD/RA, Polymyositis 10/04, Pigmentary Glaucoma. 4/07
Rx; prednisone 5 mgs, methotrexate injections.


Jesus is the WAY the TRUTH and the LIFE.... John 14:6


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/5/2007 5:17 PM (GMT -7)   
Hi Melissa:

I took DHEA back in 2003, I didn't experience any side effects from taking it. Nor did I experience any improvements while taking it. My Rheumy had suggested I give it a try. I had to take a really large dose of the DHEA and like I said it didn't do anything for me.

Good luck if you choose to take it. Please let us know how it works for you.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/7/2007 10:04 AM (GMT -7)   
Hi--
I asked about it on the endo forum I go to and a very knowledgeable person had this to say:
They can test your levels of it and it is not something you want to take without needing it. It is a master hormone that stimulates the production of other hormones, so it is strong. The over-the-counter dosages are too strong, most people who take it take for deficiency take much less. It stimulates the production of testosterone, which can cause problems for women, women are more sensitive to it. Body builders like to take it.

She recommended this site for a great overview:

http://www.endotext.org/aging/aging12/aging12.htm

I guess I can't understand why this would be better than prednisone, it seems like it would have the potential for greater sideeffects but I'm not a doctor. I do know that they have done research on just about everything and where women are concerned, they don't care how much suffering they put you through. I know they were researching the use of interferon to help endometriosis when it made my endometriosis a hundred times worse. How would an immuno-stimulant help an autoimmune disease? I don't know. But anyway, I hope there is something that helps AI disease and maybe DHEA is it. I don't know. Just thought this might help.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!


Candii
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 5/7/2007 4:16 PM (GMT -7)   
I have read in journals how high doses of synthetic DHEA can increase the risk for cancer. It plays a role in genes that cause cancer to release early. And it makes it hard for the body to have healthy mature anitbodies to fight infection and cancer cells. The body builders have used it to bulk up and have higher prostate cancer numbers. Also it causes problems with female hormones and there is a risk of reproductive cancers. I was interested in DHEA until I started reading the studies. Now it's no way.
 
Kitty38
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, Flonase.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/17/2007 7:46 PM (GMT -7)   
Bump!!! Up you go for Jenny and the others!!! Thanks Lynnwood!! This topic was over 5 months ago . . . great memory!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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