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!
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.
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.
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?
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!
Thanks JustAMom, did she consider trying oral progesterone pills?
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.
Did her hormone blood tests show a deficiency in progesterone?
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.
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.
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!
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!
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.
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.
Thanks Deb. Good to know about the micronized promethium, I'll definitely be looking into it. Appreciate the info.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2787302/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688171/?tool=pubmed&utm_source=REFERENCES_R7&LS-2659
There are more that I have found previously but those are the ones I have bookmarked. I think I had one on FB awhile ago so I will look for that, too.
Thanks Nymph, very helpful!
This is all extremely interesting and I am tempted to try progesterone cream. But isn't there a connection between progesterone and blood clotting problems?
A good question araminta! Thanks for bringing it up.
I am no doctor for sure and certainly all risk factors with anything must be considered. Safety first, and caution in all things. Always!
From what I can glean in the data out there, it is oral progesterone, actually 'progestin' that carries this risk primarily, and the study that made this FDA warning was actually testing oral progestins. Bio-identical creams are credited with normalizing blood clotting overall. There are a few accounts out there of women who reacted somewhat negatively, but there is also the argument that it can excite estrogen receptors at first which is what causes adverse effects. Hormones are tricky business to be sure, and no one should dive in uninformed nor take undue risks. Controversy on the topic is ongoing. Always make an informed choice, of course. It's always a matter of weighing pros and cons with anything.
A few informative links regarding safety -
"Studies of both bioidentical estrogens and progesterone suggest a reduced risk of blood clots compared to non-bioidentical preparations"
https://www.ncbi.nlm.nih.gov/pubmed?cmd=Retrieve&db=PubMed&list_uids=17217322&dopt=Citation
https://www.ncbi.nlm.nih.gov/pubmed/18395237
natural-progesterone-advisory-network.com/prometrium-lupus-and-blood-clots/
https://articles.mercola.com/sites/articles/archive/2011/09/18/oral-progesterone-and-progesterone-cream-complications.aspx
lifeextension.com/magazine/2009/10/Bioidentical-Hormones/Page-02
I am not trying to persuade anyone of anything and of course would advise to always make informed choices and consult trusted professionals. Before suggesting it to my daughter I of course did look into it a good degree. She had far more risk of blood clots while being on birth control pills all those years. I'm relieved she is off them. Considering the damage this dryness was doing to her body, and her mind, the minor risk of the cream seemed quite negligible in comparison. But that decision has to be an individual one of course. There is not much of anything that is 100% risk free and always of course any current health conditions and medications must be taken into account. All I can attest to is it's amazing effect in returning my girl's moisture almost completely and with a very small dose. I would encourage anyone please to do their homework before taking anything.
hi everybody, may be i missed something and im sorry if my questions are stupid but justamom you wrote that your daughter is negative for sjogren? did she have a lip biopsy? may be her dryness is due to something else? im making random questions just to try to understand why this hormone thing is so underrated by doctors!!!i would also like to try progesterone and ill ask my doctors to find out if it does not have any contrary effects on my other conditions, thanks anyway for giviong these info
Hi bluegardenia, all good questions. Sorry if I glossed over those details.
No, my daughter never had a biopsy and all blood tests of all kinds came up negative. No autoimmune markers. No diagnosis of any kind from anybody. She was looking to get a rheumy referral for further testing because all the docs she saw, including an ENT, Opthamologist, and Endocrinologist multiple times each, and an infection specialist all told her it looked like Sjorgren's... must be Sjogren's, or Lupus, because it's not anything else she was told on several occasions. They about had us convinced, and I think it would've been just a matter of time before she would have had that biopsy. I'm very glad she was spared that journey. We decided to try the progesterone cream when discovering the hormonal link with dry eye and Sjogren's. An astonishing result it was, and it's a shame not a single doc thought of it, even with her having a history of menstrual distress.
I just felt compelled to share her experience in case it might help someone else who is also experiencing symptoms without a diagnosis. It was years of misery before we stumbled on the answer. I intend to educate those doctors too so that they might be able to help the next person. Especially the Opthamologist and the Endo who completely missed it!
its amazing that none of those doctors did not send you at once to see a rheumatologist!!!most of all if they had a suspicion of sjogren or lupus,im happy for you that you got the answer or ,better the solution.anyway the lip biopsy is not like going shopping but its not that terrible as you could think if you have a good oral masto (i dont know how you say in english, im from italy) surgeon who has a good practice with that.i was lucky and i wanted 2!!!the first came out negative and second positive. ciao
Hi, just chiming in. I'm 75 and still use an estrogen gel daily. It is from a compounding pharmacy and my doctor writes the prescription.
I don't have a uterus, and have been post menopausal for 34 years, since age 41.
I've had progesterone, before the hysterectomy. And I did have a gynecologist who prescribed testosterone as well, but I haven't taken that for several years.
My husband, who is 78, does have a testosterone gel he uses. Also by prescription.
Regards, Elaine
Thank you very much for the extra information, JustaMom and Carolina. I understand we have to look at our own personal health history and be cautious about everything we take. Anyway, I've ordered some. I'm going to use it as sparingly as possible and give it a couple of months. Here's hoping!
Thanks for chiming in Carolina. It is interesting that topical hormones are what are being recommended. From what I've been able to discern, it is the preferable method when it comes to hormones, both safer and more effective.
araminta you are wise to be cautious of course, always. Do be sure to get the natural variety! There are reports that sometimes at first estrogen receptors react excitedly when progesterone is first introduced, making symptoms spike a bit, but it is the estrogen, not the progesterone that is responsible. A bit on that here:
natural-progesterone-advisory-network.com/are-there-any-side-effects-using-natural-progesterone/
One thing I learned too is how important Vitamin D3 is in assisting our bodies to use progesterone efficiently, so it's worth mentioning as well.
More than anything, what I am hoping to express here, is that hormones need to be considered and looked at, I'm not selling progesterone cream. If they had thought to consider my daughter's hormonal balance, years of suffering would have been avoided. Her decision to self medicate was out of desperation. Scores of doctors failed to find, or even look for the cause of her distress. Hormones never once came up. Basically she was reaching for the only thing yet untried. Doctors were only focusing on symptoms and never addressing the cause, as it if were some unsolvable mystery. Now we know, finally, that it was hormones, so now she knows the proper testing that will be necessary, and the type of doctor that can help her sort out her imbalances.
So just wanted to update on this topic:
I have now been using a natural progesterone cream for over a month (Emerita) and apply as suggested here.
I can't yet say if it's helping with the dryness, but it has calmed my nerves a lot!
For this reason alone I would continue using it long-term.
Has it been helping anyone else here?
Good to hear you're finding some benefit from the progesterone cream Sharon. Wish you could say it's brought some moisture relief, but calming the nerves is definitely a huge plus!
My daughter continues to do well, we are still amazed. She has recently switched to the Emerita brand, it has a much finer consistency. Results are the same, consistent and stable moisture continues.
I have had a positive report from someone on the dry eye forum who noticed some relief right away within the first few days. She is about the same age as my daughter, 25. It's been a few weeks for her now, so so far so good!
That's great to hear JustAMom!
Some additional benefits I've noticed on the progesterone:
-Better urine retention
-Moisture throughout the day on the "area of application" you suggested
-increased appetite (that's good in my case!)
-Deeper sleep
I had been only using it once in the evening up until this week.
I now began using it in the morning as well, so we'll see if anything else improves.
Thanks again!
Sharon
ciao sharon, where did you ger your cream? on line?
Ciao Blue, yes I ordered my cream online through iherb.
I order most of my supplements through them.
I've been using it for a month (bought online from Wellsprings). Haven't noticed any difference yet but I must admit I've only been using tiny amounts once a day, maybe I'll increase to twice a day.
Great news for you daughter JustAMom!
I've been using biodentical hrt (natural) from a compounding chemist which includes prog, est & dhea for years with no improvement for dryness.
I tried prog inserted in vagina also.
With SS (& prob most AI illness) it seems everyone is different.
A shame something so simple doesn't help everyone.
May your daughter continue to enjoy improved health.
Lotus1