hormones/dry eye/sjogrens? women please

[jenny2008]

It seems my sjogrens came into full force when I finally stopped having a period all together...i am young -only 34 but it has been 3 years since i have had a period and although doctors say my hormone levels are normal i often read that most tests are inconclusive..

My sjogrens hit me about 6 months after the periods stopped completely. Although my eyes were slowly getting drier as was my mouth for about a year prior to the horrible onset w/my severe dry eyes.. I was wondering if anyone out there noticed anything w/ their hormones and if so if taking hormones either internally or externally could help w/ dry eye???? i have tried testoterone cream on the eyelids but stopped after about 1 year.. it didnt help whatsoever...

i look forward to any responses.. thanks in advance!!! as it seems i do really well for 3-6 weeks and then i have a week of pure torture with the dry eyes (not sure if it is just due to allergies or hormonal).. thanks !!!!

[Sabrina]

hormones

Jenny,
Do you think it would be better to try and get this info. from the sjogrens foundation website or online support group?

I pm'd you...

[calli66]

I think there is some connection with hormone levels and Sjogren's ---just from the general statistics that say the disease occurs more often in women and especially older women. What the number? 9 of 10 having Sjogren's is a woman.

For myself, I had irregular hormone levels in my thirties---especially after my 2 children were born. My dry eyes started then. Menopause came fairly early, and I think Sjogren's started in my mid-fifties, as did Hashimoto's.

I have tried some types of hormone replacements: pills, gels, and creams, with estrogen and also testosterone in them, and they have had no effect on my dry eyes or Sjogren's---or none that the I could tell. So I don't use them much. I have the dry eyes but also Sjogren's affects my platelet count, and I think the hormones "might" improve that slightly (just a hunch, though).

It's hard to say if falling hormone levels can trigger Sjogren's or if something else is going on. Maybe testosterone has some protective effect---why men don't seem to develop Sjogren's very often.

I think the cyclic effect of dry eye symptoms is pretty common, but maybe it correlates with varying hormone levels in the menstrual cycle. Do you keep a diary of symptoms---to "collect the data?"

C

[pecan121]

I also have Sjogren's and I started having hormone disfunction in my mid thirties. I went on HRT at age 42 and stayed on it for about 10 years. I had stepped down to Femhrt for about 3 years when I had a mild stroke. That ended hormone treatment for me.

I don't know how long I've had Sjogren's but I was diagnosed a little over a year ago. I've had dry eye for several years but my symptoms were blamed on cataracts and eye allergies as much as dry eye. I can't say that my dry eye problem increased dramatically when I gave up HRT.

[Lucy]

My dry eyes started with Lasik 10 years ago. I was on HRT then. My eyes were ablaze within 2 months after Lasik. I kept taking HRT for several more years.

Three years ago, I was dx with Sjogrens. I was still on HRT and close to 20 years of it. Six months after my Sjs diagnosis, I was told I had breast cancer. Cold turkey went my HRT and hello hot flashes. I did not notice a change in dry eye either before or after stopping the HRT. Over the years, I've read about a lot of women reporting on this subject and some are better and some are worse with HRT. Others, like me (and i suspect the most) report no big difference. It's worth trying if you can. If you've had cancer, not a good thing likely.

Lucy

[stella]

Hi Jenny
why dont you go onto an HRT containing a small amount of androgen
I have been on tibolone (livial) 2.5 mgs for about 18 months now because of its androgen content
I cant say definately that that is what has helped - but something has, since i am a whole lot better
The Proff at the HRT clinic says I can be on it indefinately

[ringo]

My dry eyes started with Lasik 10 years ago. I was on HRT then. My eyes were ablaze within 2 months after Lasik. I kept taking HRT for several more years.

Three years ago, I was dx with Sjogrens. I was still on HRT and close to 20 years of it. Six months after my Sjs diagnosis, I was told I had breast cancer. Cold turkey went my HRT and hello hot flashes. I did not notice a change in dry eye either before or after stopping the HRT. Over the years, I've read about a lot of women reporting on this subject and some are better and some are worse with HRT. Others, like me (and i suspect the most) report no big difference. It's worth trying if you can. If you've had cancer, not a good thing likely.

Lucy

Hi Lucy, i just found the answer to my question to you earlier...i hope anything from my experience with this horrible disease (Sjogren's) might help.

It does seem that menopause and aging worsens it...but whether hormone imbalance is actually causing it I am not sure....as aging has shown to cause eye dryness in almost all people, more so in women.

It is an enigmatic condition anyway; all I know is that i got it when I was 23- far from aging or hormone imbalance, which I have also extensively been tested for.

So, from my experience, I do not see the disease related to hormones. I see it as a result of certain types of lymphocytes getting deranged due to some defect in the neural signalling controlling their function.

For example it is known that in the eye this invasion of lymphocytes is related to the inability of the neural messenger acetylcholine to bind to the receptors in the lacrimal glands, which leads to the brain being unable to signal to the gland to produce more tears. the process is very complicated and I do not know if it is worth describing it in full detail here.

[Kezza]

hormones

Hi Jenny,

I had terrible problems with dry eyes in the year before my periods stopped. When I couldn't stand waking up several times a night due to hot flushes I found a doctor who prescribed bio-identical HRT which is made up by a compounding pharmacist. I didn't want to take conventional HRT because I had read a report from Canada to say that it made dry eyes worse. Each day I now take 5mg of DHEA, plus 1.5mg of oestrogen and 100mg of progesterone.

I had unexpected relief of my dry eyes from Day One. I noticed an increase in oil production on my scalp and face, and I feel that that is caused by increased testosterone levels. (In the body, DHEA metabolises into tesosterone and oestrogen). I believe that I now have more oil in my tears too, which is helping stabilise the tear film and increasing the break-up time. It's been miraculous for me. I very rarely use drops in the daytime now and no more waking up with lids stuck to my eyeballs.

My doctor says that the progesterone may also be helping, because it is beneficial to mucous membranes.

In terms of negative side-effects from the DHEA, I haven't really noticed any. My hair is a little thinner, but that started before the medication.

Whilst I don't have Sjogren's, an acquaintance of mine with Sjogren's is also taking medically prescribed androgens and doing well with them. I will find out if I can what dose she is taking. She is also post-menopausal.

Since you can purchase DHEA over the counter in the US (I'm in Australia), why not try 5mg a day and see what happens? It is generally regarded as quite safe at that dosage.

Good luck.

[ringo]

My hormone levels are all in the optimal range, but I was still dagnosed with Sjogren's and I still have very inflamed dry eyes despite the fact that I haven't entered my 30's yet. Personally, as I mentioned in another post, I think that there are specifics to the tear regulation in women, which might be more affected by factors like stress or age or severe illness, than in men. Could be the protective factor of the androgens they have, not sure....but it seems the condition is not caused directly by abnormal hormone levels.

[LiliS]

yes,i,m sure of that...you should try HRT soon!

It seems my sjogrens came into full force when I finally stopped having a period all together...i am young -only 34 but it has been 3 years since i have had a period and although doctors say my hormone levels are normal i often read that most tests are inconclusive..

My sjogrens hit me about 6 months after the periods stopped completely. Although my eyes were slowly getting drier as was my mouth for about a year prior to the horrible onset w/my severe dry eyes.. I was wondering if anyone out there noticed anything w/ their hormones and if so if taking hormones either internally or externally could help w/ dry eye???? i have tried testoterone cream on the eyelids but stopped after about 1 year.. it didnt help whatsoever...

i look forward to any responses.. thanks in advance!!! as it seems i do really well for 3-6 weeks and then i have a week of pure torture with the dry eyes (not sure if it is just due to allergies or hormonal).. thanks !!!!

Yes,i,m sure of that,i,m much older but the menopause dried me even more,not only my eyes,but nose,mouth,throat,all...you should start HRT as quickly as you can,but make sure to find a good doctor( the hormone levels must be done 3 times/ month and not only estrogen& progesterone,but also thyroid hormones,prolactine and testosterone ( all done from blood in a serious laboratory) i think i will start it myself,even i could have serious side effects at 58 years old,but everything would be better than this dryness and pain...

[LiliS]

I am sure Sogren is telated to hormones levels ( estrogens and testosteron mainly) ,i had dry eyes and dry mouth 10 years before my menopause,but i didn,t need treatment for any of them...things changed dramatically 3-4 years after menopuse,when mybhormones levels became very low( i checked them).I want to try estrogen patches and testosteron oarches or gels ,i ,ve already spoke with a gynecologist who used them in Germany and said he has succes with them in menopausal women with Sogren .The only difficult thing is to find the right dosage for both hormones...anyway ,you all should know that testosterone is definetely involved in Sogren,because the lacrimal glands have receptors for testosterone! ( not for DHEA,not for estrogens or progesterone!) .