Author Topic: Sjogren's and Estrogen (hormones)?  (Read 14975 times)

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13437
Re: Sjogren's and Estrogen (hormones)?
« Reply #15 on: April 13, 2008, 11:38:46 AM »
Interestingly enough we always have a small amount of estrogen on board and continue to make it and store it. I am thinking that a little is made by one of the other glands ( I can't remember which gland at the present time--maybe the adrenal???) and this estrogen is stored in our fat cells.

I don't have that many hot flashes anymore in spite of no ovaries and I am sure that my fat is at least doing me one favor.  :D :D  The thinner women don't have this estrogen storage advantage so that is my excuse for staying pleasingly plump. I was perimenopausal when I had my hysterectomy and I can't say that I noticed that much at all after having the surgery. I started on the Premarin the next day and that was that. I have had sweats or flashes since in my mid 30's so I just didn't get to upset about it.

I do know that some of the hot flashes are caused by the sjogrens and the myasthenia so it really is hard to know where to place the blame. Some day down the road the researchers will figure this all out, maybe!! Irish ;D


eyeamdry

  • Guest
Re: Sjogren's and Estrogen (hormones)?
« Reply #16 on: April 13, 2008, 02:34:31 PM »
Quote
Interestingly enough we always have a small amount of estrogen on board and continue to make it and store it. I am thinking that a little is made by one of the other glands

Many of the cancer medications are to block as much of this "estrogen" as possible, especially if the tumor was estrogen/progesterone positive.  The usual length of time taking the meds are 5 years after cancer, and I think some even longer.   Arimidex made me feel as though I had Sjogrens x 10....and I had to stop taking it.  Tamoxifen, however, seems to have much less side effects on me and it looks as though I'll be able to take it for the duration.

As someone said, we are darned if we do, and darned if we don't on the hormone thing.  For me, looking back, I needed this badly as I was through menopause early at 42.  A natural menopause, no hyster.  I had an awful time with the symptoms and was unable to funcetion at work, etc.  Perhaps Sjogrens was lurking in me all during that time?  If I'd taken hormones for maybe 5 years and then weaned off, likely I wouldn't have breast cancer.  Decades (20+) years seems to be another factor.  You'd be surprised how many women in their 70's are still taking these.  My sister had a co-worker who was 71, (yes) and had breast cancer last year.  She was still taking estrogen!  After cancer, the whole hormone thing becomes a "no brainer" and they just plainly say, STOP. 

Lucy

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13437
Re: Sjogren's and Estrogen (hormones)?
« Reply #17 on: April 13, 2008, 09:30:53 PM »
Lucy, Isn't it something that people take estrogen into the later years. I really don't know if they think it helps ward off aging. I can't say that aging stopped for me when I was on the premarin. I took only the Estrogen so the way I understand it the hormonal effect isn't quite as much an issue. But then, who knows!!!! Anything is possible to anyone at anytime.

The good thing is that the Tamoxifen has a good track record. I have known several women on it during early 40's and they really had the hot flashes. It does a good job of getting rid of the estrogen. I am so glad that you are able to tolerage it. Have you heard if they advocate it for more than 5 years?? Just curious. Irish ;D

gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: Sjogren's and Estrogen (hormones)?
« Reply #18 on: April 14, 2008, 06:58:45 AM »
Thanks for your info LynnMarie....I think your right. Now, If I can just find some type of estrogen that my body will tolerate? I cant find anything that gives me moisture back in all of my mucous membranes...tired of people telling me to drink more water too...it doesnt help. My doc told me I was drinking too much water...ha! go figure.

Gurs
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13437
Re: Sjogren's and Estrogen (hormones)?
« Reply #19 on: April 14, 2008, 06:56:23 PM »
gurs, I guess I am a little confused. Are you saying or thinking that estrogen will help you get back some of your moisture?? I have never heard one thing about this happening. I started to lose moisture long before I was even perimenopausal but it was such a slow process that I didn't realize it at the time. My voice got hoarse back in the early 1970's but no doc every asked or questioned me about it. My mom was the one who really noticed it.

I have done a lot of googling and research and have not seen anything about the hormones reversing the dryness issues.The only dryness that seems to be affected by the low estrogen is the vaginal dryness. I had vaginal dryness way back in my mid 20's and never knew why. Doctors would always comment on it at my gyne exams and they didn't know what caused it either back then.

Are you using the Salogen for your mouth and sucking on the sugar free lemon drops? If anyone has seen anything that is for sure about the reverse of the oral dryness with hormones please post us about it. Thanks. Irish ;D

gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: Sjogren's and Estrogen (hormones)?
« Reply #20 on: April 15, 2008, 06:01:11 AM »
Estrogen is supposed to help the entire body, we have mucous membranes all over, just not the vagina? Soon after my hyster, and low estrogen, My sinuses and eyes were drier than ever. I started some bio-identical estrogen cream and I noticed right away more fluid in my nose & mouth. but I know I need alot more estrogen in my body. Now, I guess its possible that my Sjogrens is greatly aggravated from the lack of estrogen and getting worse, which explains Lucy's comments when she took Arimidex, which blocks the estrogen, her Sjogren's got profoundly worse? oh yikes. Ive read so many articles, some say estrogen helps with dry eyes, while others say it can cause dry eyes? some have more joint pain on it, while others say it helps...Just pray we can all find the right balance for each of us.

Gurs
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Annj5

  • Full Member
  • ***
  • Posts: 246
    • Reasonably Well
Re: Sjogren's and Estrogen (hormones)?
« Reply #21 on: April 17, 2008, 11:45:19 AM »
At the conference in Phoenix for Sjoggie's last week, the researchers there stated that their research indicated that the estrogen AND female androgens - like testosterone - are responsible for keeping autoimmune disease in check.

Normal women have a balance of estrogen and female versions of testosterone. When this balance is upset, then it seems that more autoimmune diseases such as Sjogren's can become active.

They said that DHEA, which is a very weak testosterone, when given in supplement form helps women with Lupus, but doesn't seem to help Sjogren's. So more research is needed.

So it seems that there is a hormone link to this dryness but it isn't estrogen alone.
Julia

wen.uk

  • Guest
Re: Sjogren's and Estrogen (hormones)?
« Reply #22 on: April 17, 2008, 11:52:55 AM »
Hi all
Never really connected the two.  I had a total hysterectomy at just 29 and have taken premarin ever since (I'm now 44).  Have to say the difference when I started to take the hrt was incredible and my quality of life so much better that even though I have now halved the dosed, I would be quite worried to stop it altogether. 

Was dxd with the SS last year so I could't honestly say that I've ever linked the two together.

Must say that the 'fevers' I get now are quite unlike the hot flashes I used to get in my pre hrt years, there is a subtle difference in them.

lainier

  • Guest
Re: Sjogren's and Estrogen (hormones)?
« Reply #23 on: April 18, 2008, 07:20:15 PM »
Hi Gurs,
I was wondering whether you have tried incorporating phyto estrogens into your diet? For example small amounts of soy products ( not overly processed ones such as soya cheese, I'd stick to tofu and tempeh. I think that different types of legumes and some herbs also contain phyto estrogens. You can do a search for it. I think that they are also called isoflavanones (sp?).
Also, have you tried taking natural progesterone cream, this may be of help. I find that I respond pretty well to it. It might help to balance out your hormones and our bodies start to produce much less starting in our 30's. It is an anti anxiety hormone and sure calms my frayed nerves!
Good Luck,
Elaine

gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: Sjogren's and Estrogen (hormones)?
« Reply #24 on: April 19, 2008, 02:39:54 PM »
Hi Elaine,

Yes, I tried and take some of the phytoestrogens, but I cant take soy, severly allergic.
They dont seem to give me the relief I really need. Im also looking into some other natural options. I used progesterone cream from my compounding pharmacy before for a bit, but it really made my stomach worse, and was told not to use it if Im low on estrogen, and it can cause more yeast issues? I might give it a try again soon though.

Thanks for your help.
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements