Menopause and Sjogren's

[Jackie]

Has anyone else been told that their Sjogren's Syndrom was caused by a lack of estrogen and that estrogen replacement therapy would cure it?

[dbab]

Hi Jackie,

Theoretically, I'm not sure since given that Sjogren's is a disease found more in women by a large margin.  I'd be curious to see where this theory came from though.

[gurs]

ok, here is my brief story...had Sjogrens since I was 13 years old, if not sooner...soon as puberty started, I had the dryness starting.

I had total hysterectomy 4.5 years ago and have been suffering horribly ever since. Been to countless docs-hormone as well, and trying to take any form
of HRT, either bio-identical or other hasnt been easy. My body hates it, but does give  some relief of the dryness, but im still very low on my levels. Im on a bio-estrogen cream right now. My Sjogrens got about 80% worse too since all this.....Ive read so much over the last 4 years and some say the estrogen aggravates us, while others
can find some relief with HRT...you can always start some HRT in very low dose to see how it makes you feel, because everyone is so different.

I totally feel hormones are big issue with Sjogrens and other autoimmune diseases.

gursie

[ohiolady]

I definitely feel it is a trigger.  The people I know with Sjogrens have gone through early menopause.  I had a complete hysterectomy at age 36 but have taken hormones since.  I do have autoimmune in my family but wonder if the early menopause or menopause in general made me more susceptible.  My rheumatologist said a lot of her lupus patients will have a calming of their disease after menopaue.   

Anna

[dryeye09]

Dr. Christiane Northrup, the doctor who appears on PBS, mentions Sjogren's on her website:

http://www.drnorthrup.com/womenshealth/healthcenter/topic_details.php?topic_id=99

[susan]

I have had Sjogrens for a long time, but after a total hyst., it came on really strong----for me, there seemed to be a strong correlation.
Another hormonal correlation I noticed was that I felt fabulous during my pregnancies!!

[dbab]

You also have to take into consideration the other hormones that could possibly be involved like progesterone.  It's definitely interesting though and food for thought, given that most Sjogren's sufferers with the exception of some of us develop the disease around menopause.

[amberjolie1]

I haven't been told anything like that, but I am getting looked at to see if perhaps I might be going through early menopause, because of some other things going on.  So perhaps in my case, there may be a correlation.  However, I'm on birth control pills which supposedly mask menopause, so along the same vein, wouldn't theoretically someone on birth control pills not get Sjogren's if it was due to low estrogen?  If that was so, then that wouldn't be the issue in my case.

[gurs]

I heard that estrogen is higher during pregnancy, and that is why SS gals may get some relief?? very interesting indeed. I wish I could tolerate it..
Im going to consult with a new hormone doc and hoping he can help.

gursie

[Navigator]

It would be nice if it was that simple...but once the immune system is misidentifying proteins thats that...there is no cure.   A total replacement of the immune system via bone marrow replacement might do it...but the risks outweigh the syndrome.

I just read the book "The Emperor of all Maladies" which is a biography of cancer and it was fascinating and parts of it give a good glimpse of how complicated  disease processes are, how they are chemically based and how therapies try to manipulate the chemical aberations.  I recommend it highly..and it just won a Pulitzer so I guess others found it fascinating as well.

That being said estrogen or HRT might be able to mitigate some symptoms although I 've never seen that in any readings I've done.  For us "older" people HRT therapy carries increased risk of breast cancer and heart attacks.. so one has to consider the trade offs.

According to my Rheumy one hormone that has been shown to be mildly beneficial to the progression of SJS and the ability to better survive any B-cell lymphoma that might develop is Vitamin D. 

I'd be very interested in any research articles that people might find.

[Liz D.]

Does anyone know if I am right in assuming that HRT has more estrogen in it than birth control pills?

My doc wants me to stay on the birth control pill indefinitely because she is afraid if I go off of it, my Sjogrens symptoms will be much worse.   But I think I would not be pleased if they ever put me on HRT because of the breast cancer corelation.  Now I am wondering if by taking the bc pill for so long, it is the same risk as HRT.

Liz D.

[gurs]

Im think you can get just about any type of dosage in either now a days...my rhuemy even recommened me trying a low dose BC in place of all this
bio-identical creams that dont seem to be helping me much...I know alot of us autoimmune people, esp with lupus, it can also aggravate the symptoms.
All I know is the hysterectomy I had was the worst decision I ever made...ever since then, my health has declined 90% and I look like a old lady.
I have bone issues now, bursitis, receding gums, no hair at all, extreme neuropathy, dizziness, migraines..allergic to everything .uhhhhhh..the list goes on.

If you dont have any problem with BC pills now, would not change anything.

Gursie

[Kerrikins]

I've always assumed the opposite. After all lupus symptoms are usually less severe after menopause and sjs is very similar to lupus. Also I know there are exceptions, but hormonal birth control is not usually recommended for people with rheumatic disease because the estrogen can cause flares. Hormonal birth control made me very sick before I knew I had sjs, I couldnt tolerate it. And before plaquenil my life was heck up until my luteal phase each month. Now that I've been on meds for a while my disease activity isn't as tied to my cycle, thank goodness. Anyhow, it may be different for everyone but I have always felt better when my estrogen levels are lower.

[meow]

I haven't been told anything like that, but I am getting looked at to see if perhaps I might be going through early menopause, because of some other things going on.  So perhaps in my case, there may be a correlation.  However, I'm on birth control pills which supposedly mask menopause, so along the same vein, wouldn't theoretically someone on birth control pills not get Sjogren's if it was due to low estrogen?  If that was so, then that wouldn't be the issue in my case.

Nope, I was on the pill most of my adult life, but still got Sjogrens.
I don't think it's caused by low estrogen---but I think that HRT might relieve some of the shared symptoms, particularly  vaginal dryness and skin issues.

[gurs]

sounds like it has to be the balance of hormones....easier said then done right?? Im going to keep working on it though.

Gursie