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DHEA and Diagnosis
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Fesser98Sp posted:
Ok so I am still undiagnosed, but I have a question. I know DHEA is helpful in reducing Lupus symptoms. But if someone has a naturally occurring slightly elevated DHEA wouldn't that interfere with Lupus diagnosis?? If it reduces the symptoms, wouldn't it also reduce the elevated levels of antibodies in the blood stream making diagnosis more difficult?
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lupylisa44 responded:
That is a very good question! Unfortunately, I don't have the answer but maybe Dr. V will know the answer.

I took pharmaceutical grade DHEA for about a year. I had a prescription and purchased it at a compounding pharmacy Itr didn't really help my lupus. All it seemed to do was give me a bad case of cystic acne!!!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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R Swamy Venuturupalli, MD, FACR responded:
In studies of DHEA - there was no effect on the levels of ANA or increase in complements. DHEA is a naturally occurring adrenal steroid which is stimulated in the adrenal gland which seems to help with lupus fatigue. There have been several small studies which led to a huge multi center study with 380 patients. And this study failed to show that DHEA really did that much. The study was published in 2002, and did not get FDA approval, however many clinical practices still continue to use it, especially in patients with a lot of mental fogginess and fatigue. So DHEA is not dead yet.
 
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Fesser98Sp replied to R Swamy Venuturupalli, MD, FACR's response:
Well that is good to know. I guess I am just getting frustrated. I feel lousy and no one can tell me why. Every time someone tells me my labs are normal I want to cry. I have the symptoms, but without the obvious butterfly rash or positive lab work I can't get a diagnosis. I am to the point that I am Ok with being sick, I just want to know what it is.
 
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bvalenti688 replied to lupylisa44's response:
Thanks for your post. I have been taking this for a few months and the cystic acne started a couple of weeks after I started taking DHEA and I have been diagnosed with Lupus for 3 years. S
 
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bvalenti688 replied to Fesser98Sp's response:
Don't give up. I the lab isn't drawing the blood at exactly the right
time, you really can't tell what is the right time. I had Lupus for over 10 years I thought I was going into congested Heart failure
in Jan 2009 and the Heart doc ran every test and because I was
between Rhemotoligsts he ran all the those lab studies. He found
everything! It was such a relief. The doctors had attributed everything to Fibromyalgia which I also have. It was just great to know what the other symptoms were and how to deal with it.
 
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Fesser98Sp replied to bvalenti688's response:
I'm not. The Rheumatologist I saw ran everything he could think of and all the were negative. (He ran all antibodies on top of the usual ANA, etc. because I have had shingles a couple times.) He said they were so negative that it couldn't be anything autoimmune, and that it was highly unlikely that it was lupus, but not impossible. He basically left it as I don't need to see him unless I am having problems, which I have been mostly in a remission-ish state. Which is good, but doesn't give me any answers. He did say to see a neurologist, and my neurologist says I only have migraines. I have an appt in April with another neurologist for a second opinion.


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