About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, March 18, 2013

Lupus & DHEA

About four weeks ago, I wrote a post about hormone deficiencies in fibromyalgia, specifically Growth Hormone and DHEA (Dehydroepiandrosterone).  I made a point of mentioning that levels of these hormones, or their by-products, are usually measured by blood tests and that these hormones are prescribed when deficiencies are discovered. However, because I've realized via twitter just how many lupus patients also have fibromyalgia and because for various reasons, lupus has long been on my personal radar, my ears perked up when I discovered that DHEA is used in lupus, though differently than it is where fibro is involved.  In other words, DHEA is "different" for lupus treatment.  When I heard my rheumy say that DHEA is prescribed for many lupus patients without a base line blood test for DHEA having been drawn, I was hooked, not to mention almost shocked. The "almost" with "shocked" is added only because really, with lupus, not much is "normal" at all.

To get back to the DHEA matter, I also found this interesting since too much DHEA can cause facial hair growth and acne, side-effects which are quite undesirable for women. In that earlier post when I mentioned that I'd been on and off of DHEA for a few decades (link), in the interest of brevity I didn't mention that I know my DHEA level is getting too high and that levels are now "fixed" until my next major health crisis comes along by the much increased peach fuzz on my face.  Being practically hairless on my face, it's a shocker to see anything show up in the "beard" area.  Actually, you'd think that when I have no "peach fuzz" whatsoever, it would be signal to me that my DHEA is low, but we're talking about moi here, the "queen of no short-term memory," after all!

But back to DHEA and lupus.  Unfortunately for the female of the species, it is women who tend to get lupus far more often than men.  (Yes, walk into a rheumy's office and you see about the same female to male ratio as you get in the audience of "The View" - or in an ob/gyn's office for that matter: take your pick!)  Normally, when a doctor prescribes a hormone to someone who is deficient in that particular hormone, the doctor prescribes it to make up for a deficiency.  Pretty straight forward here, right?   However (and you just knew a "however" would come sooner or later!) when it comes to women and lupus, DHEA is often prescribed to them even though they may actually have normal levels of DHEA.  Interestingly enough, DHEA is ordered for them without blood levels having been measured, in which case the DHEA is intended to act like a drug (medication).   Consequently, the DHEA in lupus has effects beyond simply maintaining the body's hormone balance. Why do they do this, pray tell?  At first glance, it would seem so irresponsible and reckless!

It all comes down to the effect of sex hormones on patients with lupus.  The more "female" a woman is, the more likely her lupus is going to be severe, and possibly life-threatening.  This "phenomenon" became known over 30 years ago when animal studies were done and data collected.  There is a strain of mouse which develops pathology that is almost identical to lupus in humans.  These are NZB/NZW (New Zealand Black/New Zealand White hybrid) mice, which have been extensively studied in order to gain insight into lupus in humans.  When the ovaries are removed from the female mice and the mice become less "feminine," they live longer and have less kidney disease than their female counterparts.  On the other hand, if the testes of the male mice are removed, they die sooner than their male counterparts.

The same pattern holds true with hormone injections.  If you give male hormones to the female mice, the development of lupus is delayed and they live longer.  If you give female hormones to the male mice they die sooner because they get lupus earlier than their male counterparts.

DHEA is made by the adrenal glands of both men and women (humans).  But men typically have much higher levels than women until advanced age.  That being the case, medical investigators decided to treat female lupus patients with DHEA to make them less "female."  It seemed to work and lupus patients receiving DHEA seem to fare better than they did before they started getting their DHEA.

It actually made a lot of sense since those women with lupus who became more "female" by taking birth control pills or becoming pregnant faced horrible complications due to lupus flares.

Before I get into the home stretch of this post (hallelujah!) I would like to point out that in the case of DHEA and lupus, not only should you discuss this with your physician because there are a number of circumstances that would preclude you from taking DHEA.  Furthermore, the DHEA should be bought from a compounding pharmacy to insure the highest quality preparation possible, vis a vis, consistency and excellent bioavailabily.

Here is a prime example of a hormone being used as a medication to treat a disease instead of a supplement to normalize the body's hormone status.  Even though some of the women with lupus receiving DHEA develop facial hair growth and acne, most would prefer these side effects to having a miscarriage or needing to go on kidney dialysis.  Moreover, an added bonus of taking DHEA for lupus is that the disease becomes more easily controlled, allowing the patient to often get by with less medication, including prednisone and it's humongous list of potential side-effects. 

Even though fibro is found in more women than men my rheumy told me that the only time he uses DHEA for fibro patients is when they are indeed deficient in it.  Of interest is that my rheumy has actually measured DHEA in his lupus patients.  Many of these unfortunate women were found to have no detectable DHEA in their blood.  So perhaps giving DHEA for lupus without testing isn't so crazy after all.  It seems to get results.

And you wonder why I find lupus fascinating?

As always, hoping everyone out there is feeling their best, only better.  Ciao and paka!


Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything!  It's easy: follow the directions on the right-hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find it, so it's a firm promise, safe with me!)


11 comments:

  1. Very interesting. I have Lupus yet have never heard of this treatment. Think I'll definitely do a little more research on the topic. Thanks for sharing♡

    ReplyDelete
    Replies
    1. Best of luck, Dianna. Perhaps this may be something you and your doctor find to be a successful possibility. xx

      Delete
  2. I also have lupus and took DHEA. It did wonders!

    ReplyDelete
  3. Thanks for the article! I learned a lot about lupus!

    ReplyDelete
  4. Thanks for sharing this article about DHEA..
    comprar DHEA

    ReplyDelete
  5. Very useful. Thanks for sharing.

    ReplyDelete
  6. Wow, so... DID you get any lasting positive effects??? Because I've been sick w SLE/Fibro for 12+ years, taken every Med on the market that could even POSSIBLY help & here I am - in MY sick bed - barely able to stand! Interestingly, my Dx was just after my last pregnancy & I KNEW something was very wrong but OB refused to listen. Now I have my heart under constant attack, liver & now my blood. Does it EVER end??? I want to survive to be a mother to my awesome children yet ... I am honestly SOOOOO SICK that I don't know what to DO next! I swear, I am willing to TRY ANYTHING to live, to get some "quality" in my miserible life. What do you think about HGH??? And what dose of DHEA do you think is good to start, as a loading-dose?

    ReplyDelete
    Replies
    1. Hiya. I'm new. New here but old on topic. :) I found out about common low levels of DHEA in both SLE (Dx 34yrs, symptoms 38+yrs) & CFIDS/ME (Dx 24yrs) about 20yrs ago via web research (when we logged in with Mosaic, ha). Talked with rheumie. Assured I only read research and not BS. Combo beg/con to test. Phone call from nurse w results that I "needed to see an endocrinologist yesterday" then Dr apologized personally for picking on me about internet research. The bottom of the normal levels was 30 for a 90yo male. My DHEA was 8. Uh, Houston we have a problem. End result - I was Dxd with adrenal insufficiency *also*. DHEA can be cortisol sparing but I wasn't making either one! So I'm a lifer on *both* DHEA and prednisone. Like prednisone, it has to be adjusted. Instead of a burst&taper, tho, I started lower, increased till stable, then tapered again to where it remained stable. There wasn't as much known 20yrs ago. I highly recommend testing first, trying a lower dose for side effects and working up till stable levels. Requires good Dr who will equal your research and test periodically to adjust dosage. UNLike I have my base dose of prednisone and can adjust based on how I feel any given day/week & call the doc if I can't fix it--the DHEA took a couple weeks to notice any difference and then WOW. I could actually pick up a half gallon of soymilk! By myself! So I use a No No for blonde fuzz PRN. Yes! to having most of what my adrenals are supposed to make! But no zits and I'd love oily skin (huh? Yeah I can hear it...). {Sigh} only so much greasing you can do when you can't bend very well to slime all over. Downright crispy. :-P HTH! ~s

      Delete
    2. PS--My elder princess pittie boxer mix was Dxd with osteosarcoma last week, I was referred to a clinical trial of "Naturasone" for canine cancer, and gee... It's DHEA based treatment! If it keeps that beautiful big bright eyed grin longer? I'm game to try it. For her and her dependent little brother (also pittie mix, also former death row kill facility)

      Delete
  7. Si desean obtener mas información sobre dhea visiten: http://dhea-europa.com/blog/, el mejor blog para informarse acerca de este suplemento, que es, para que sirve, beneficios, consejos y contraindicaciones en esta maravillosa página!

    ReplyDelete
  8. http://www.hopkinslupus.org/lupus-treatment/lupus-medications/dhea/

    Do not take without testing and oversight by Dr. ^^^^^ (like my reply above)

    ReplyDelete