Hormone Connection

[Kell]

I am looking for information relating hormones and sjogrens. Has anyone ever read abstracts or research regarding this connection? My gut is that there is a connection related to balance of, blocking of protective proteins, or lack there of. Thank you!

[Navigator]

I only know that from what I have read SJS seems to appear after menopause and most often in women.   But you should do more research.  The female body has to be primed to accept ?non self? proteins ...IE babies so our immune system might be more complex and prone to complications.

[JustAMom]

After over 4 years of severe dryness of eyes and throat, multiple specialists and many tests coming up negative, we found some studies done on the hormonal connection to dry eye. Testosterone mainly, especially in menopausal women, and very few doctors across the country willing to prescribe it. (It was my 25 year old daughter who was suffering.) We got the idea to try natural progesterone cream as I did find a scientific study, from 2008 I think, as well as a couple accounts online from women who said it helped.

Here is that study - Actually 2007 -
The Use of Progesterone Cream to Treat Dry Eye: http://iovs.arvojournals.org/article.aspx?articleid=2382585

Within the first couple hours of applying the cream, my daughter noted a definite increase in saliva and had the first night in forever that she slept through the night instead of waking in pain in need of eye drops repeatedly. Oh yes, and the improvement continued and has remained so and stable for over a month now. So this was for sure the issue all along, and not one doc thought to look at hormones. Pretty much everything but that was tested. Her endocrinologist only checked thyroid, which was normal.. like every other test. We do wish we figured it out sooner of course. All those years searching for an answer, and all it took was a affordable product right off the shelf! We are overjoyed of course, and a little angry not one doc thought of it.

Now that I think about it it makes perfect sense. When a woman ovulates, her body produces moisture so it is prepared to hold on to that egg. At this time is when progesterone soars and becomes the dominant hormone. So if you are on birth control or experiencing hormonal imbalance and not producing that rise of progesterone, you can get dry. Painfully dry which most here can understand. If you are not ovulating, you are likely not to be making progesterone and vice versa.

I want to shout it from the rooftops really so that maybe others can be spared the years of agony my daughter experienced. Not to mention the emotional and financial toll, every supplement under the sun, elimination diets, etc.. All doctors kept telling her it looked like Sjogren's and she was working on getting a rheumy referral. This is a fairly well established link hormones and dry eye that certainly an eye doctor or endocrinologist should have known. You'd think!
She only uses one average dose a day and the difference has been astonishing. She was even able to pause one week without a backlash of dryness returning. So she is going to continue 3 weeks on, one off, for now, because it is working, like a charm.

I appreciate the forum so much as I spent time here looking for answers and coping tips for her. Just had to share her experience. If it can help even one person, it is certainly worth noting.

[Sharon]

Thank you for sharing this JustAMom!
Great suggestion!
No, doctors do not think of these things in 99% of cases.
How did you get the progesterone,what brand and percentage?

[JustAMom]

Hi Sharon,
Yeah she just picked up the cheapest bottle that she found, it was called Progesta Care and was using just one pump a day on the small bottle, just 10mg. It is a popular brand easy to find. Found it at Whole Foods. She now got the larger bottle that delivers a 20mg dose. It's working just fine but she is considering a pricier brand next time, perhaps for a nicer consistency and better absorption.

She started with applying to thin skinned areas but heard it can build up in fatty tissue over time. It is said it's better to apply to mucous membranes so now applying to vaginal areas. It did give her slight headache first few days probably a shock to her system, but that went away by day 4. They say ideally you should use twice a day, every 12 hours but she finds this difficult with her work schedule and is just using at bedtime.

I expect dosing may be different for all. Just a small amount did work for her because I suspect she was without any in her system for a very long time, probably had not ovulated normally in years. Such relief in any case!

[Sharon]

Thanks JustAMom, did she consider trying oral progesterone pills?

[JustAMom]

No to the oral. I myself had negative experiences twice with oral progesterone, really messed me up each time. It is synthetic I believe for one, but also studies have shown the best delivery method is a transdermal approach anyway. Many things are because once a substance hits our stomach acid, it's often neutralized or altered in some way and basically will not be absorbed as needed into our blood. This is why there is a trend to bioidentical hormonal creams being put together by compounding pharmacies, pretty well proven that it is just a superior delivery method through the skin as I understand it.

[Sharon]

Did her hormone blood tests show a deficiency in progesterone?

[Maria3667]

Hi JustAMom,
I tried the cutaneous route for progesterone too and the effects on moisture producing glands did improve. But I had to quit after a few months due to the side effects such as depression and weight gain.

You are correct about the hormonal link. There's several studies on PubMed about patients with Sjogren's being androgen deficient.

For me supplementing with low dose testosterone, dhea and sometimes also pregnenolone (only 2.5 mg) greatly benefit me. Even being able to wear contact lenses again!

Good luck.

[JustAMom]

Thanks Maria,
  Very helpful info there! The hormonal connection is clearly very real and more focus should be put upon it imo. My daughter is new to the progesterone cream so time will tell. I will pass along your valuable info. Nothing like direct experience! Fantastic that you found the right combo that works for you.

Sharon,
Unfortunately no doctor was interested in running a hormone panel! Even at her request. Of ALL the tests the dozen docs did to her and not once did they look at her hormones. So yeah her levels are unknown but she will be tested in the future after finding a new OBGYN. She is also fresh off birth control pills and was told she should wait a few months before testing anyway. Those bc pills were a lifesaver in managing her cycle but she finally decided if it was causing or exacerbating her dry eye it wasn't worth it. And it is well known they do.
The progesterone in birth control is progestin, the same as what they put in oral progesterone pills so I guess she had actually been taking some of that all along until she quit the pill. Allll her symptoms are indicative of estrogen dominance.

There is quite a difference between natural creams and oral synthetics so I would encourage anyone to look into it before trying either. Short basic article here comparing the two: https://womeninbalance.org/resources-research/bioidentical-progesterone-vs-synthetic-progestins/

Maria's post here is most excellent! I learned the same about the androgens -testosterone - dhea.. but also learned it was very hard finding a doctor to prescribe it. So in desperation and convenience the cream was the ticket, for now. A more customized solution certainly would be preferable.

[Sharon]

Many thanks JustAMom, I just ordered a progesterone cream to give this a try.
I have been diagnosed in the past with estrogen dominance.
Progesterone pills stopped working when the SS hit.
Testosterone cream did not help my dryness and I have been allergic to DHEA any way I take it.
Really hope this helps!

[JustAMom]

My prayers and positivity be with you Sharon. Sounds like you've tried everything else, my gosh. May this fiiiinally be the key that provides you some sweet relief!

[Nymph]

I do remember a study about hormones and autoimmunity in general, as well as other factors that make women more susceptible. I will try to find it this weekend.

[Deb 27]

They do make a natural progesterone pill, it's called micronized promethium.   I've taken it for years. I was using transdermal cream but was afraid it might not be absorbing. I keep getting polyps in my uterus and that's why I switched to the oral. Never heard of using it in the vagina. Good idea for absorption .

Thanks for sharing this information JustAMom.

[JustAMom]

Thanks Deb. Good to know about the micronized promethium, I'll definitely be looking into it. Appreciate the info.