Hi patricia-it seems its you and me on this board. Anyway, me too sjogren's and severe osteoporosis. My bone spec. thinks that the bone loss is primarily due to estrogen deficiency in meno. And, a sjogren's expert I talked to at the univ. says she thinks estrogen is implicated in sjogren's--she is a researcher and this is her focus.
So are you like me about 6 yrs post meno and you didn't do hrt??
YOu don't really state whether you have osteoporosis, do you??
Also I indicated on another post , I have hashimoto's thyroiditis--do you have hashi's??
Last edited by osteoblast; 07-12-2008 at 12:27 AM.
Hi Osteoblast... yes, I have osteoporosis and I am post menopause, but I went through menopause early due to a hysterectomy when I was 34 (10 years ago). I have been on estrogen via the patch off and on for about 6 years now so I am not sure what is going on. I have been told that my thyroid is fine (but I have uncovered in my own research that your thyroid can be deficient for years before it shows up on a blood test, so I don't really know what to believe there exactly).
What does it mean when you say that estrogen may be implicated in Sjogrens? Does that mean that estrogen may be a cause of Sjogrens or does it mean that it is the other way around (that Sjogrens may do something to your estrogen level)? Sorry to be so dense; I am just trying to learn all I can about Sjogrens so I can fight it well. Thanks for your help!!
Patricia-I too am new to this. Estrogen implicated meaning post meno estrogen deficiency. Are you still on estrogen??
I am taking the vivelle dot .075 patch and only two months into treatment. Because I have a uterus , I will have to do progesterone and the thought is maybe the mirena IUD-but with my thin skin , I am thinking that is just looking for trouble. I may either switch to a patch with both esto and progest OR take oral progesterone ea. 3 mo.Since you had a hysterectomy that's not even an issue for you.
The researcher at the univ. said that post meno is a big time for women to get sjogren's.
I was diagnosed with Hashimoto's when I was about 45, eight or so years ago. The endo I saw at the time didn't put me on thyroid hormone because my TSH level was "fine".
In March 2001, at age 45, I was diagnosed with osteoporosis and put on appropriate meds. Five months later, the month I turned 46, my periods came to a sudden halt. I was put on HRT at that time. I have been off the hormones for about a month, now that I am almost 53.
In 2001 I was finally diagnosed with hypothyroidism, after years of being symptomatic, but ignored by my doctors because my TSH was "fine".
About one month ago I was diagnosed with Sjogrens, based on a positive SS-A, ANA, and a slightly elevated RF--and symptoms of dry eyes and mouth, joint pain, and fatigue. My ANA level has been mildly elevated for 15 years or so.
On the autoimmune front, I also have mild myasthenia gravis and vitiligo.
Among the three of us there does appear to be a pattern of coexisting SS and osteo, and Hashi's as well, for osteo and me. Patricia, have you ever had your thyroid antibodies tested? I would bet a quarter that you have Hashi's, even if your TSH level is "fine".
I am very curious about this whole thyroid thing. When I read about hashis, it does seem consistent with some of what is going on with me (fortunately not the depression and only to a degree on the fatigue so far) but the docs have tested for the antibodies numerous times (that being said, I do indeed have sjogrens and ocular MG without testing positive for those antibodies either). My most recent TSH was 1.6. That is still well within the normal range, no?
And what is up with this osteoporosis? I have eaten more than my share of proper dairy my whole life (calcium and vit D), am a runner (weight bearing exercise) AND I love the sun (having spent my whole life outdoors without sunscreen). I really should have cancer at this point, not osteoporosis!! Seriously, I even went on estrogen replacement right away after my hysterectomy at age 34 and am still on estrogen now (10 years later).
Here's another question for you ladies... have you had any exposure to mold? The reason I ask is that this all started for me two years ago when I was living in a house with toxic mold. Yes, the environmental folks came out and did extensive testing and found the black gooey stuff. Even worse, they found it around the heater so every time I turned on the heater (which was most of every day as I lived in a foggy coastal city), it blew the stuff into every room of my house. I was told to move that very weekend and to leave my belongings behind. I had lived there for 5 1/2 years. I was then tested for mold poisoning in my system and it came back positive for tricothecenes (the most toxic kind). To this day I cannot go near even the front door of a used bookstore. I wonder if this poisoning weakened my system to the point of allowing these auto-immune processes to kick in. I would love to hear your thoughts/experience on this.
And more importantly I want to thank you again for all of your helpful suggestions on alternative healing. I haven't picked up the evening primrose oil yet, but I am going to do that. By the way, what are you two taking specifically for the sjogrens? Any experience with Cellcept? My doctor wants to put me on that after a couple more months of the Prednisone.
So, it turns out that Sjogrens can indeed cause osteoporosis. Apparently the Sjogrens can throw off the PH balance in your system to where the body leaches its needed minerals from the bones. Unfortunately there is little documentation about this so far (as seems to be the case with most autoimmune disorders) but I am going to keep researching. Do let me know if you find anything as well. By the way, which drug(s) are you taking for the osteoporosis? My rheumatologist is leaning me towards Fosomax, but my PCP has mentioned several and she wants me to choose the one I feel comfortable with. I would love your input!