Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: gurs on April 11, 2008, 09:45:09 AM

Title: Sjogren's and Estrogen (hormones)?
Post by: gurs on April 11, 2008, 09:45:09 AM
Ok, was wondering if anyone has had any problems tolerating any types of estrogen, bio-identical or synthetic? After my hyster in 2006, I was using a bio-estrogen-testosterone cream and it was ok...was able to function. The last year Ive been going nuts, so anxious and just dried out like you cant imagine..its the the Sjogrens is 100% worse. Tried all kinds of estrogen  and seem to make me feel worse...cant tolerate even the smallest amount?..feels like Im in a massive autoimmune flare..my estrogen levels are very low at 30.
Any advice is appreciated...

gurs
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: lesleyjoy on April 11, 2008, 01:21:24 PM
Hi Gurs, I'm the same as you. Although my Estrogen level are low, the only type that suits me is the Ovestin vaginal cream. I think that's because it's just absorbed locally not systemically. It is good for dryness and urinary related complaints. Worth a try if you haven't already tried it. Also I take fish oil capsules and Oil of Primrose which help alot with dryness, especially eyes but they're great for lowering cholesterol levels as well. I'm 51 but have had the low estrogen for many years now.

Synthetic estrogens aren't reccommended for menopausal women as there is a proven link with breast cancer. I don't know very much about the bio-identical ones.

Take care,
Lesley(NZ)

Title: Re: Sjogren's and Estrogen (hormones)?
Post by: salsen on April 11, 2008, 10:37:07 PM
There was a doctor on Montel Williams a few days ago talking about the bio-identical ones and discussing how essential it is for a women to be tested and treated for low hormone levels.  According to her this is completely different from the ones that have been linked to cancer. 

This is the first time I have heard of this but she did have patience there who truly trusted her.   Something I think I need to read more about.
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: Annj5 on April 11, 2008, 11:25:43 PM
How interesting that this question should come up today! I am at the National Patient's Conference for the Sjogren's Syndrome Foundation in Phoenix. One of the sections today addressed the link between Estrogen and Sjogren's.

The speaker was Dr. Ann Parke, professor of medicine U of Connecticut. In her talk, she gave us literature from various studies which state:

Esterogens:
Cause increased immunoglobulin synthesis
Promote resistance to immune tolerance
Females have a better resistance to a variety of infections but are more prone to autoimmune disease
Animal studies have demonstrated that hormonal manipulation can influence the expression of both SLE and Sjogren's syndrome in animal disease models
Female animal models develop more severe disease and have shortened life spans AND changing the hormonal environment produces less severe disease and can prolong the span for affected females. Manipulation in this case was decreasing estrogen production and adding testosterone.

She also discussed the benefits of taking Estrogens, which are the usual LDLs, and increasing HDLs, protecting against coronary artery disease.
So she said that it's a balance. She recommends for some of her autoimmune patients not to take esterogen.

Another interesting quote is that for her rheumatoid arthritics, which is also an autoimmune disease, during pregnancy, when the progesterone is increased over the estrogen, 80% of patients with rheumatoid arthritis improve during pregnancy and for 18 months postpartum.
In other words, immune modulation takes place during pregnancy which allows immunosuppression to take place to avoid the woman's body from rejecting her baby, which also allows autoimmune conditions a reprieve.

I am seriously considering tapering and then discontinuing my estrogen, of course after discussing this with my rheumatologist.

I will post more about this conference on my blog:
http://reasonablywell-julia.blogspot.com/

Julia
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs on April 12, 2008, 05:56:43 AM
Thank you all for your input..I have been on the bio-estrogen and it doesnt do much, was told Im not absorbing it, but everything else I have tried, even some of the bio-vaginal estrogen's, made me feel worse. Im guessing my body is just not tolerating it. I also take evening primrose oil and fish oils, but im guessing nothing can replace the lost estrogen that is so badly needed. My entire body just isnt functioning right either. It's been a nightmare.
Not sure if its the Sjogrens out of control, or the hormones. Guess I will keep trying new things.


gurs
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: Katybarstool on April 12, 2008, 07:26:08 AM
Hi Ladies

I'm very interested in this discussion. I had total hysterectomy Oct 2005 and entered the menopause within days - the hot flushes and insomnia were horrendous. I tried Black Cohosh for 8 months, but then in desperation started using Oestrogel and vaginal oestrogen. I couldn't believe how much better I felt within a month or so. When I changed the timing of the Oestrogel and so went for 36 hours without any, I had my very first severe flare up of osteoarthritis. Within 6 months I also had a diagnosis of Sjogren's (although I believe I had had the symptoms to a lesser extent for many years). The rheumatologist said the menopause is often the time when both Sjogren's and OA appears. In fact, he called my OA, nodular OA of the menopause.  The literature he gave me (from Arthritis and Rheumatism Council (ARC) suggested the oestrogen actually helps with the symptoms of both OA and Sjogren's, and certainly for me, that has proved to be the case.

I know that not everyone will be the same and I for instance can't take EPO or some of the other supplements, but for people who can tolerate hrt, I would highley recommend Oestrogel - sorry that is the European name. I don't know what it would be called in other countries.

All the best everyone.

Kathyx   
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs on April 12, 2008, 09:55:37 AM
Hi kathyx,

I wonder if its the same as Estrogel ? there are so many types, I will keep trying though.
They say estrogen also acts like an anti-inflammatory in some cases, for me, its tolerating it.
My body seems to be in a very reactive mode right now, I cant even take any motrin..its very strange. The hyster was just too much for this sick body to handle, but I wont give up.

thanks!

Gurs
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: irish on April 12, 2008, 07:15:46 PM
I am 65 with a very, very low estrogen level. I occasionally use the cream and no longer do the hormone tabs.

I had a hyste and ovaries removed in 1990 and the day after surgery I was started on Premarin. I had a great gyne and I asked him how long I should take the Premarin. He told me to figure out how long I was going to live and stop them 5 years before I died---which I really thought was a hoot. (I'm a nurse and nave a warped sense of humor)

Anyway, since I only took the Premarin there was not the concerned that there is when both progesterone and estrogen are taken. I stayed on my premarin unil about 2003 or 2004 and then just sort of quit without giving it much of a thought. I was abouat 60 ish by then.

I have to say that I had the sjogrens and myasthenia symptoms back in the 1970's and the hypothyroid symptoms mid 1980's but not diagnosed until 1989 before the hysterectomy. I do think that there is some relationship between the hormones and the autoimmune problems. I did notice that my asthma was always worse right before my period.

I guess the bottom line is everyone has to find a doctor and do what will help them. I do get concerned about many of the herbs as many of them cause liver failure and people don't realize it. The best thing to do is to find a good doc and do what makes you feel better. Also, diet, sleep, and watching the stress are very important. When we get in these middle years I think that our bodies don't tolerate stress as well as when we were young. This can throw us into a flare fast. Good luck. Irish ;D
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: nisha on April 12, 2008, 07:46:29 PM
I had ovarian cancer when I was very young and therefore have no ovaries.  I was put on estradiol injections immediately and have been on them ever since (I do not absorb meds well so oral estrogen does not work well).

I worry about being on it for so long, and I am totally confused about the connection with sjs.  I can’t figure out if more is better or worse.  I talked about going off it some time back prior to my sjs diagnosis and my GP said that since my body produces none at all I would be miserable (not like after menopause when the body still produces some estrogen).

I know I need to find out more but until I can find a better rheumy I am probably out of luck.  I don't really know how to find out.

nisha.
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: eyeamdry on April 12, 2008, 10:27:00 PM
Not to throw cold water on the thread here, but, the length of time we take the hormones (either regular or bio-identical) should be looked at carefully and decide with your doctor how long to do this.  I had done the full estrogen thing since I was about 42 until I was dx with breast cancer last year.   Any time I discussed it with my doc, we/I decided that I had hot flashes without it at full dose and life was not good like that.  Looking back, I wish I'd used this during the few years of the worst symptoms and stopped after that. 

No one can say if 20 years of that caused my breast cancer, but I'd be willing to bet a dollar.  I know estrogen is supposed to help your heart, which was big in my case as my parents both died of heart attacks in their 50's.  This post mostly pertains to older women like me who have been on this stuff indefinitely.  I still have my uterus and ovaries.  My cancer doc told me there is more evidence that long term hormone use also can cause ovarian cancer.  Oh goody.  This is not meant for younger women like Gurs and others who are just beginning this "journey."  If I'd gone off the hormones before the cancer, perhaps I'd not have gotten it.  But, in the end, I had to stop hormones cold turkey no matter how bad it was. 
Lucy
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: Katybarstool on April 13, 2008, 05:20:46 AM
Hi Lucy

I'm sorry to hear about your breast cancer diagnosis. How are things now?

In respect of hrt, we are damned if we do and damned if we don't, seems we can''t win, can we?

Hugs
Kathyx 
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs on April 13, 2008, 05:39:40 AM
Yes, Its funny too how some women do really well on HRT, while others like myself, simply cant even function. There also seems to be a huge difference from the younger gals having surgical menopause, versus going into it gradually later in life. All I know is, its made my quality of life terrible...the dryness is just unbelievable, joint pain, anxiety, neuropathy, yeast, bladder..the list goes on. I would take just about anything to feel better...dispite the risks.
Boils down to the quality of life issue....just wish my doc's would have warned me, I would have never had a hyster unless it was life threatening..mine was just for endo/cysts.

gurs
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: jannz on April 13, 2008, 07:10:13 AM
Hi Everybody,

There are some informative 'podcasts' about hormones and health by Dr Elizabeth Vliet.   I've read a couple of her books and I think she is really an effective communicator.  My daughter has Polycystic Ovarian Syndrome (PCOS) so I bought one of Dr Vliet's books on the topic --  I learned a lot about hormones in general reading that book. 

Here's a link to her archived shows --  http://www.herplace.com/archives.htm (http://www.herplace.com/archives.htm)   

I noticed that she has a show about fibromyalgia and the link to hormones coming up.    Also, some shows on progesterone  too.   

http://www.herplace.com/   (http://www.herplace.com/)

Trying to understand this hormone issue is just complicated....and if you also have autoimmune disease...well...that makes it even harder to sort out.   I sent in a request for a show about the relationship between autoimmune disease and hormones...I hope she does one.

Best wishes...
Jann
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs on April 13, 2008, 10:07:15 AM
I did buy Dr. Vilets book, Screaming to be heard, it's excellent. Im sure there is a connection between autoimmune and hormones. I think I started Sjogrens when I hit puberty? now with surgically induced menopause, just aggravated it, but in a major way. Oh well, will keep trying different things until hopefully I can find some relief.

thanks everyone for your info....

gurs
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: lynnmarie219 on April 13, 2008, 10:54:50 AM
This is a very interesting topic gurs......and thank you Julia for posting some information that you learned  at the SJS conference in relation to this.

I had a complete hysterectomy in July of 2001 and went into immediate menopause as well. I wasn't functioning very well and I had an Estrogen patch on me before I left the hospital. It worked ok but the adhesive was really playing havoc on my skin....so I switched to Cenestin (an oral and synthetic estrogen)......took this is different doses over a couple of years and then slowly weaned off of it.

I'm not sure of the exact time I stopped taking Cenestin, but I am going to look it up somewhere in my medical files I have because my symptoms really flared up in the spring/summer of 2003 and I was diagnosed with sjogrens after seeing 2 rheumatologists  (positive bloodwork and lip biopsy in addition to symptoms) in late September of 2004.

So it kind of all makes sense to me now in the relation of estrogen and SS. I'm sure I always had SS and the symptoms....but it really came out big time after the estrogen was completely gone.

 Hmmmmmm..........very interesting......thanks for the topic!   
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: irish 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

Title: Re: Sjogren's and Estrogen (hormones)?
Post by: eyeamdry 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: irish 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: irish 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: Annj5 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: wen.uk 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.
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: lainier 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
Title: Re: Sjogren's and Estrogen (hormones)?
Post by: gurs 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.