Just wondering who has taken any estrogen before? Im still trying to tolerate a low dose bio- cream, but think its aggravating my sjogrens/lupus..not sure. Ive tried several other forms, all which make me sicker...daily migraines, anxiety, stomachaches, dizziness, extreme hair loss..the list goes on and on. Ive been to several different hormone docs and they each tell me something different. My blood serum shows my estrogen very low (61), while my saliva testing revealed that im way toooo high, off the charts? When I try to stop the cream, im so dried out, I literally cant breathe...I have no moisture in my body at all?
Just wondering if some of us just cant tolerate this stuff? anyone else have trouble?? or, good results??
Also, Just read something in the April 2009 issue of the SSF Moisture Seekers Newsletter about hormones/estrogen
and it stated that women using estrogen alone, or those who used estrogen with progestin, were both at increased risk of dry eye syndrome..compared to those with NO hormone therapy???? very interesting indeed? I thought estrogen was supposed to help with the dryness?
Gursie
I'm so glad you raised the oestrogen subject. I do think there is a relevance to autoimmune disease.
I have noticed, for example, that although my symptoms get worse before a period, they get acutely worse 7 days in which I can only associate with a rise in oestrogen. Maybe we have a sensitivity to oestrogen generally....it's either too low or too high or there is an allergy to it? I don't know....I did suggest that oestrogen was involved to my GP but he just laughed at me. He may be right but I would like to think that someone was researching this for us..
Thanks for introducing the subject...wonder what others think?
Mary
Well, I don't think it is funny to say there is not a correlation. Doesn't Sjogrens (usually) occur in women around the age of menopause. And, I had a rheumatologist tell me when women's hormones settle down, their autoimmune illness will often settle down. She said they see this with lupus a lot.
I wear an estrogen patch since my hysterectomy 18 years ago. When I try to decrease my estrogen, I have overwhelming fatigue, migraines, can't sleep, too irritable for anyone to be around, joint pain and just generally miserable. I'm almost 54 and my doctor and I weigh that against the risks. Also have osteopenia. I'm hoping as I age that I can gradually decrease my dose but it will be very gradual.
I truly feel for you. I think you know your body and you may have to tweak doses and then just let your body settle into that level. If you are a young woman, it may be even harder. Another thing that doctors don't tell you is, it is not always that easy to get the right hormone level after hysterectomy. I truly wish that I had kept my ovaries and entered a more natural menopause but can't go back.
Anna
I had a complete hysterectomy about 8 years ago....and went right on the estrogen patch. My skin kept breaking down from the adhesive so I then switched to a synthetic estrogen which I took for several years and finally tapered down and stopped all together.
I believe that my sjogrens symptoms were triggered by the hysterectomy and HRT as I started to have more pronounced issues after surgery and was diagnosed a few years after that. Now looking back there were many other symptoms that fit the pattern of sjogrens BEFORE the hysterectomy like GI issues and dry eyes....but I think they all came to a head after having my hysterectomy.
Just my opinion...but it sure fits with the theory that hormones are related. I went from too much estrogen to none after the surgery and then started different doses of HRT afterward....seems to make sense!
Ive been to sooo many doctors, and did alot of research, and each have their own opinion on the matter....I guess for some, HRT aggravates the autoimmune, while others experience some remission. Im also concerned about my now vascular problems and even using estrogen. I have aura migraines at least 4 times a week, im really afraid of a stroke?
I've also come back low on my thyroid free T3, so Im wondering if some of my symptoms are caused by this. I also have next to nill testosterone. I used to take this as well,
but stopped it when I started getting too much anxiety and unwanted dark hair growth. As soon as I stopped this, I lost about 50% of my hair, especially in the back.
I guess I will keep trying new things to see what might help. I just finished my course of rituxan, and feel sicker than ever. I think rituxan ate up my estrogen?? (ha ha)
thanks gals!
Hi girls,
Well the available evidence on estrogen does seem to be conflicting....
A few years before Sjogren manifested itself in me, my periods almost dried up (at 30 years of age). I always thought this was due to estrogen dropping sharply.
The estrogen patch certainly did cause better overal moisture.... but also instilled a horrid anxiety in me. It was so awful I couldn't sleep any more and had to take medicines. So I quit the patch. Now I try to battle the dryness with an array of oils, vitamins, Salagen, DHEA and low dose testosterone. It helps a little.
Take care. Maria
Hi ladies
I had total hysterectomy amost 4 years ago and have been using oestrogen gel for around three years. It had been a Godsend for me. I decided not to try the patches as I have had reactions to lots of dressings and thought the adhesive on the patches could do that. I also wasn't too keen on tablets, but the gel has worked out fine for me.
My rheumatologist was of the opinion that hrt (oestrogen only after hysterectomy) helped a lot with the vaginal atrophy that can come with the menopause, and for me, was a big problem with the SJS. It also helps with the fibres (can't remember what they're called) that support the pelvic floor which, again, is a must for me.
By the way, I think some women are more sensitive to hormonal fluctuations than others. I used to suffer terribly with PMS, and before I started the hrt, I was in a constant PMS state - it's a wonder my beloved never smothered me. The oestrogel helped stabilize my moods.
Kathyx
Hi Katy,
Please tell us the name of the estrogel you are using!
Hi Maria
It's called Oestrogel Pump Pack and is manufactured by Laboratoires Besins International, 13 Rue Perrier, 92120 Montrouge, France. It contains 80 grams gel. Each metred dose is 1.25g, which contains 0.75 mgs estradol. The usual daily dose is between 1.50 and 3.00 mgs. In the UK it is procured by, and repackaged by OPD Laboratories Ltd, Watford, Herts, WD2 4PR, and is available on prescription.
Is that enough information?
Kathyx
I had a bunch of stuff all at once. Sjogrens, I'd had for years before my diagnosis 2 1/2 years ago. Then six months after that i was diagnosed with breast cancer. Well, I had been on full strength premarin and progesterin for 20 years and with the discovery of the breast cancer---It stopped cold turkey. No anything with estrogen or progesterin in it as it feeds cancer cells.
I was a mess to say the least. Then facing a lumpectomy with 7 weeks of radiation. Hot flashes, more dryness......
I heard some doctors prescribed Effexor for women who could no longer take HRT and were suffering the effects. I know this does not answer any of the questions, but perhaps gives someone a different idea if they cannot take estrogen.
I've been on Effexor for two years now and it has helped with night sweats and some other things. I wonder what would happen if I went off it now. I won't try just now.
Lucy
Hi Lucy
Yes, it must be so difficult if you have an oestrogen receptive cancer. I don't know anything about the Effexor, but I'm very glad it helps you with those horrible symptoms.
Kathyx
Doesnt Effexor cause more dryness?
Gurs wants to know:
QuoteDoesnt Effexor cause more dryness?
I don't "think" so. I am on so many "drying" medications that I didn't notice an increase with effexor. Then again, I don't know how much more dry I can get. Effexor is an antidepressant and is used for different things. It would be worth a try for someone having symptoms of not enough estrogen, or in my case none. In my case, since cancer is involved, we can't chance even a "whisper" of estrogen.
As for stopping meds that "may" cause dryness, I have since I've had Sjogrens stopped taking Zoloft because I was no longer depressed and the HRT which I know is debated on and off whether it helps or hurts dryness. Seems there was one more I stopped because I no longer needed it and there was no increase in moisture with any of my meds. Others may have different results. Lucy
I also take meds that cause dryness (Lexapro and Bentyl to name two), but I try to weigh the benefits of taking these over the dryness and for me its worth it. I also take salagen to help with the dryness.
I guess its a personal choice for each of us and you just have to experiment (with your doctors approval of course) on what works for you and what doesn't...as well as weighing the benefits of how each med works with each of your symptoms including the dryness!
Just my two cents worth..... :)
My symptoms of Sjogren's really began to get bad at menopause. I started HRT and it helped. I tried to stop after several years but as soon as I tried to reduce the dose I would have a migraine every day. So I went back up on the dose and the headaches were better. I discuss this with my doctor a lot and she says if it is helping it is worth the risk to take HRT. I tried SSRI's like Effexor but they dried out the mucous in my lungs so much I had trouble breathing. A lot of trouble breathing. So they are out of the question. I take both estrogen and progestin.
KathyL
I fear breast cancer as a result of taking ERT but I would have 0 quality of life without it. What about my theory that as we get older we should be able to wean down? Any thoughts???? Of course, I'm 54 so I am older:)
Confused, I use the Vivelle Dot and change every 3 days and I use the highest dose. I found I got the best results this way.
Anna
Hi Anna
I'm 52, but had no signs of the menopause at 48 when I had the hysterectomy. I have tried reducing the oestrogel by one quarter, but I started getting very low mood, so increased it again.
I have six monthly reviews of the hrt, and we always discuss the risks. To be honest, I would rather take the risks and have a good(ish) quality of life. That's just my opinion of course.
Hope everyone is having a good day.
Kathyx
Kathyx,
I feel the same way. In fact, if it wasn't for the fear of breast cancer, I'd take for the rest of my life, without question, it improves my quality of life tremendously. Glad to know there are others that feel the same way.
Anna
Anna
Yes. it's a tough one, but just one of the choices we have to make.
Kathyx
I have a friend who has been on HRT for at least 20 years .
Her doctor stoppped it when she was about 65, and she is still working as a cleaner!!
I stopped after 2 years , then got all the dry issues... Dolly
Kathyx and Anna,
I totally agree with you. I went through menopause in my mid forties. I made the decision that HRT might give me breast cancer but without it I might kill myself so I'd live longer on HRT. And if I get cancer I will have had a much better quality of life these past few years.
KathyL
Hi Kathyl
That certainly puts risk into perspective, doesn't it?
Hugs
Kathyx
I had a complete hysterectomy 4 years ago at the age of 31. I decided that HRT was the way to go because otherwise my body would be lacking and then who knows what or how I'd feel. It took over a year and a doctor change for me to find the right balance. I'm on Estratest HS and Progesterone 2.5mg, Without the progesterone my headaches NEVER went away. The doctor that did the surgery said that because I no longer had a uterus, I no longer needed that hormone. Phooey. Your body still reads that hormone whether you have all your pieces parts or not. So I went back to the dr. that delivered my boys. I am still on the HRT and have no plans to stop right now even though I was "warned" by the intern at the neurologist that 5 years is the MAX a person should be on it. I'll be honest- I'm really afraid of how I'll feel not taking it. I already feel pretty darn rough from the SJS and Raynauds that I'm afraid not having those hormones on board I will really go down hill. It will be interesting to hear what the rheumy says about it. I'm not ready to feel or look any older than I already do.
Hi Lesmom
I'm sorry you had to go through all that at such a young age. There is a really useful site for woman with hormone concerns after hysterectomy. If you google Surgical Survivors Guide to the Menopause, I think you will find it helpful.
Kathyx
Thank you, Kathyx
I haven't been on the hystersister website for a really long time, but I did find good info on there. I will certainly look the site you suggested up. I think theres just a lot that is overwhelming healthwise right now and I get to be a chicken about alot of things.
I appreciate the understanding and the concern.