Hello, I am new to this forum , I was diagnosed 3 years ago after a onset of 2 missed menstrual cycles and trouble swallowing, everytime I ate my food would hang if that makes sense and I was scared to eat. After a dr app I was scheduled for endoscopy, when I woke up the Dr told me there was nothing in there it was in my head. Thank goodness a family practioner took a look at me. A few labs later I was diagnosed with positive ana, ssb for sjogrens. I have no doubt my hormones triggered this and many others due to fact that 80% are females in there 40’s. I am 47 now. I have more issues today than when I was diagnosed, dryness everywhere from mouth to eyes and everywhere else, elevated white blood counts, with fatigue and muscle weakness. Before this I was very healthy, didn’t even have a family dr, exercised weekly and felt good most days. I have been to so many dr’s trying to figure out the hormones but no one wants to address that they are tied together until I finally went to endocrindologist that said they were intertwined but wasn’t anything we could do about it.my body will go in and out of menopause, I;m not talking perimenopause, I will have estogen of 20 yr old and then a 60 yr old. My fsh range from 67-10 at any given time. Has anyone else experienced this? I am currently taking restasis & exovac that has quit working but everything else I take is holistic. The rheumy said plaquenil probably wouldnt help.
Welcome! Yes, hormones certainly can play a role in the onset of autoimmune disease. I developed psoriasis close to puberty and psoriatic arthritis after my second child. Sjogrens had likely been lurking since my early twenties but fully flared up about 5 years ago. I’m right in the same age range as you are.
You mentioned a few things about meds, including that evoxac stopped working. Did you ask about pilocarpine? And why is plaquenil unlikely to work according to your rheumy?
Hello, the rheumy said that research has showed that plaquenil does not
work. I can take exovac for few days and then it ceases to help and I’m
dryer than before. I typically get same response from dr’s that I’m lucky
I don’t have rheumatoid arthritis or lupus. They have not done the
research it seems on Sjogren’s, its so much more than that, I try not to
complain but it has definitely changed my life. I use tumeric, bone broth,
vit d, c, b, magnesium and I do acupuncture which really does help. My
thought was to get my hormones in check to possibly put the disease back in
check but to no avail. I;m not sure if you are familiar with fsh test but
my estrogen and progesterone will be low (on hormones)but my lutenizing
hormone normal which means I’m ovulating , the endocrinologist said it
was definitely weird but he basically couldn’t fix it. I am at a loss for
if they will come up with any treatments for us.
I I find your link between hormones and Sjogren’s very interesting. I was diagnosed over 10 years ago. I probably had the disease somewhere between 15 and 20 years. I find your link very interesting because I went through menopause at the age of 43. That’s pretty young. Now I am wondering if Sjogren’s had something to do with me going through it so young.
Funny that your rheumy said plaquenil doesn’t work. It is for joint pain and fatigue (and is a disease modifier that slows the progression). Its been a life saver for me…especially for lifting the fatigue.
Otherwise, eating reasonably clean helps too and I can see where hormones can play a part too. Our bodies are so intricate its amazing.
I have been on the Plaquenil for years too. I can tell when I miss a dose. I really will ache much more. I was surprised that your doc seems to think it is not good for you. But we do not know your personal medical history. I would get a second opinion though. Plaquenil is a pretty standard treatment for Sjogren’s I think. Most doctors are okay with patients getting second opinions.
There’s a definite link, 80 percent of all sjogren’s diagnosis are women, I
like you think it’s possible I had a mild version for years but hormones
triggered mine or it triggered hormones, one or other. I get tired of
people saying, even drs your lucky you got that one instead of lupus or ra.
It totally changed my.life from active to pushing myself to survive the
day. I lost my husband a year in may and my symptoms have been triple fold
with the stress of it all. I am hopeful stem.cell will eventually be a cure.
You could be right. I know my symptoms got much worse after my mother’s
death. I’m doing my best to keep as much Mobility as I can right now. I do
water therapy twice a week. I’m trying to see specialist as often as I can
and figure out what the damage is and what I have to do to fix as much as I
can. I don’t know what I can do about the fatigue though. Manage it as well
as I can I guess. I met another woman in my water therapy classes weight
who has Sjogren’s. Is the first time I met someone else in person who
actually has it. It was sort of surreal. I don’t think either one of us
knew how to actually process it. But we both agreed that the hormone thing
was very likely. I’ve also thought that the theory that a viral catalyst
good be probable. Right around the time that I first started showing
symptoms of the Sjogren’s, I had the flu for the very first time of my
life. I know that I had to be genetically predisposed for the Sjogren’s to
have it but I’ve always wondered if that bout of flu kicked off the
symptoms. I guess we will all Wonder until they do much more research on it.
Yes we are pre genetically disposition and supposedly we all test positive
for the epstein barr virus , not sure how that plays in. I keep up to date
on research and that’s how i.know they are fine tuning the stem cell which
has only been used in past for extreme cases of autoimmune such as ms. I
know someone who traveled to Russia fir treatment and is cured.
I know this is an old post but I wanted to comment in regards to the hormone question. My daughter (25) did not have a diagnosis but suffered for over 4 years with severely dry eyes and mouth/throat, saw all kinds of specialists and got tons of blood work done. When nothing whatsoever showed on any tests, the doctors kept saying it looked like Sjogrens and she should see a Rheumy for further testing.
Long story short, before doing that we questioned the hormone connection too as she has indications of PCOS. Anyway, she tried some natural progesterone cream and within a couple days her moisture was returned to her. All of it, 95% at least. Before this she was spending as much money on eye drops as she did food, and now just uses drops a little in the morning. It was a miracle for her, and no coincidence, as she has now been stable over a month. Crazy crazy that not one of the doctors thought to run a hormone panel…including the endocrinologist, he just looked at thyroid. Just about everything but hormones was looked at. Four agonizing years of painful dryness resolved with a product right off the shelf. So yes, I think there is a connection all right. Lack of progesterone was certainly the cause of her dryness with no doubt. I expect many others could likewise benefit. We are angry it was not caught sooner, but overjoyed that she has her life back and can actually sleep through the nights again. Hormones indeed.
I wanted to add something here regarding the link to dry eye and progesterone, some science.
Also btw, someone with a positive SS diagnosis shared with me that progesterone cream did lessen her dryness, so diagnosis or not, it can be effective.
Anyway here is a study from 2007:
The Use of Progesterone Cream to Treat Dry Eye:
Hi, that’s awesome news that progesterone helped, as for me I have had the
problem with absorbing it. They uped the dose to 3 times normal amount and
still imbalance, I recently started the micronized progesterone and I feel
tad better but still not great. I have never tried the cream. I feel bad
that your daughter has this at such a young age, I was 44 when it hit and
it’s much more than dry eyes and mouth, it pretty much dictates my
everyday. As far and the doctor’s I honestly don’t think the left hand
knows what the left hand is doing… Its tied in and they want gyn to handle
hormones and they specifically handle autoimmune, they want the eye dr to
handle the eyes. There is no real treatment it gets exhausting.
Hi Tina, If the oral progesterone seems like it might be helping a little , if it could just absorb better, then the cream seems like it’d be exactly your answer. From what I’ve read, all hormones are much more effective when the delivery is a topical one. Our digestive systems can be quite the challenge for many oral medications. Not everything can survive our stomach acids, in fact not much can. I understand the creams and gels to be much more effective as well as a safer method. When we place things on our skin it is a much more direct route into our blood stream. So sorry you’ve been struggling with this, it’s just horrid and we have found a legion of doctors just worthless in helping. My daughter reached for that bottle of progesterone cream out of desperation and one last hope. The astonishing results shocked us and I have been reading like mad since to understand it and spread the word so that more might find relief. I urge you to try the cream, it could very well be the silver bullet it was for my girl. Oral progesterone just is not the same. I’ve had my own negative experiences with it. The cream is not only safer, it is much more effective. If you do try it and I hope you will, just be sure to get the natural kind that is paraben free. It’s inexpensive and easy to find, no prescription needed.
It definitely wouldn’t hurt. I try to share everything I know because
its been a journey. I have yet to take the plaquenil the rhemy prescribes
because its just another poison. I take a whole host of natural
supplements including vit c, d, turmeric, collagen, b-12 etc, etc,
lol.(although I do use restasis and sometimes exovac when I’m particulary
symptomatic. I still function and work but quality of life has changed
drastically. They do not touch on the fact that saliva aides in our
digestion as well and I have terrible reflux and lack of saliva interferes
with my sleep. No water helps when you wake up trying to swallow and feels
like your choking on mucous. They really down play this disease and I
really hope your daughter continues improving and has minimal symptoms.
Exercise and trying to limit stress does help though. I have been worse
since my husband passed as to there is no good way for me to avoid stress
right now. Acupuncture helps as well.
Though it has not been my direct experience, I am close enough to it to know how devastating it can be. It was all my daughter could do to hang on to her job, she was really at the end of her rope when we discovered the progesterone cream, in the nick of time really. She lost so much sleep with this and it was really tearing her down.Real damage was being done to her body with the fear of atrophied glands and she was having some dental problems surfacing from the lack of saliva. It was not addressed by doctors as the critical issue it is, and most frustrating is the lack of exploration into cause, it’s always just symptoms addressed. Of course that is important, but the cause was never much addressed. Just kept being told it is incurable. Once I discovered the hormonal link I was a bit surprised it was never looked at. Anyway, I would encourage you to try the cream. I’m not selling any, i just want people to feel better and to experience the great relief my daughter is enjoying. It turned this around nearly 100%. So I would tell you run, don’t walk, pick up a bottle. I have had confirmation from at least one other SS patient who also found relief with the natural progesterone cream, so it definitely has the potential to help. The study I linked too, is referring to the cream, not the oral form. So sorry about your husband, surely the stress of such a loss is not just meditated away. Very difficult indeed. The cream is known to have a relaxing effect though, so it may help in that way too. You could always consider testosterone as well, it has been shown to be effective in menopausal women, but that requires prescription. She tried everything, but it was not until the cream that she found honest , long lasting, stable relief and the full return of moisture. I will hope that it can do the same for you. It just might!
Can I ask you what brand and strength
Certainly Tina. She just grabbed the least expensive on the shelf. It was called Progesta Care, it has a pump which delivers a 20mg dose. ( NOT Progesta Care Plus - it has estrogen) She first was applying to thin skinned areas as per instructions but we learned it can accumulate in fatty tissue and will really be better absorbed by mucous membranes, so she switched to applying in the vaginal area. She just does one dose nightly. It is advised that splitting the dose to twice a day, every 12 hours is ideal but with her work schedule she finds that difficult so is just using nightly. It is recommended a break during the month… depending on your cycle or lack of one, she is using 3 weeks on and 1 off while she is menstruating, to try and mimic somewhat as a normal cycle would do. She will probably experiment with brands maybe try a pricier one next time just to see if it has a finer consistency. I think all that matters is that it is natural, contains a USP progesterone (usually wild yam), and should be paraben free. Progesta Care seems to be the best stocked variety, have found it available in many stores. She picked it up at Whole Foods. Good luck!!!
@JustAMom - It’s wonderful that your daughter has experienced so much relief from such a simple treatment. But for all of the users here, I just want to add in some thoughts. We can share what has worked for us. But we are not medical professionals, and we should check with our doctor before making medical decisions such as adding in hormones to our treatment regimen. Your doctor may want to conduct an exam and lab work before approving such treatment. And you should always let your doctor know what over the counter treatments you are using.
Since she directed this advice to me, I will address it. I appreciate her enthusiasm to share what worked for daughter in hopes to give someone else relief. We are all adults. I see her advice as less harmful and the posion the doctors prescribe without even listening to our symptoms. I have had 2 ultrasounds and multiple trips to Gyn about hormones to no avail, since he refuses it admit that its tied together. I hardly think some progesterone cream would harm someone. I keep up with my fsh’s and estrogen & progesterone levels, but thanks.
Yes indeed. You are an adult.
When I was first diagnosed with an autoimmune disease, I was overwhelmed with information, including medical options and alternative options. I looked into some alternatives, and even tried out a few. None of them were research based, and none of them worked. Some alternative therapies ARE supported by research, but I couldn’t find anything solid supporting the use of progesterone cream to treat Sjogren’s. I recognize that it is working beautifully for JustAMoms daughter. But I want people who may be starting out to recognize that they should be talking to their doctors before trying out any supplements, etc, without having evidence that it is useful and safe.