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Old 05-09-2009, 08:28 PM   #1
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doinket HB User
Genetic predisposition and estrogen...

My aunt on my father's side was diagnosed with lupus as a young woman. It killed her long before I was even born. My father's brother who is probably somewhere around 60 years old was just recently diagnosed with both lupus and diabetes. My 21 year old sister has been having strange symptoms for a while now, including back pain, numbness, tingly extremities, painful knees and joints, and has been back and forth from the doctor's. They haven't come up with anything. These symptoms started when she began birth control. She is going to her first visit to a rheumatologist in a few days and I'm afraid she might be diagnosed with lupus.

I also started taking birth control and am about to finish my third month. I read some disturbing numbers - the chance of developing lupus is increased by 2.5 times in the first three months of taking birth control. Since two of my father's siblings have/had it, I'm paranoid that my sister and I will both end up with lupus

I would like to know if anyone has experience with lupus and estrogen. I've read that symptoms can be triggered by environmental factors, so if my sister does in fact have lupus, will her symptoms disappear if she stops taking birth control? Should I be concerned about taking birth control?

 
Old 05-11-2009, 01:08 AM   #2
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Angel MJ HB User
Re: Genetic predisposition and estrogen...

hi doinket ... don't have insight into the question you posted but do know that i was never able to take birth control, i tried everything but ended up having reactions to it all ... i would start & stop as i could feel it made me sick. only after being dx SLE did i make any connections ... it wasn't my trigger but made symptoms worse.

Dr Daniel Wallace The Lupus book talks about family connections & lupus and it is not a sure thing that either you or your sister will develop lupus, they say that siblings of lupies can have positive blood tests but NEVER develop symptoms. i would arm myself with knowledge ... enough to put your mind at ease and not soo much that you fret yourself sick ... it is mostly symptoms that they dx ... bloodwork is only 1 of 11 criteria (i think) ... read the sticky posts at the top of this message board ...

20 years ago getting lupus was probably not good as the disease was not 'recognized' and when organs got involved could be fatal ... now in medical advancement ... the prognosis is far better ... has your sister discussed your family history with her doc & shouldn't he be ordering a screening panel?

you are obvioulsy being strong for both of you & i might not know you but i love you for that ... being alone is the scariest thing for me but you have each other and you are here looking for insight ...
i would discuss birth control issues with your doctor and bring up these facts & figures that you mentioned!
some medications can be triggers ... The Lupus Book also talks about these ... see if you can get your hands on a copy (library/bookstore)

Especially if your sister is having symptoms she may really need you ... i did not immediately start asking questions & doing reasearch ... the dx set me back & i lived in denial & went along with what the docs were saying ... now i am in control & i play the biggest part in my dx & treatment. i do not take there 'word for it' anymore.

All my strength to you ... you are a wonderful person!
Angelique

 
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Old 05-11-2009, 05:58 AM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Genetic predisposition and estrogen...

Doinket, hello & a BIG WELCOME. I want to add to one of "Angel MJ's" thoughts. As she wrote, I've also read that having lupus in the immediate family adds "slightly" to risk. Dr. Wallace discusses *closeness* of the blood tie, differentiating between "first-degree relatives" (brothers, sisters, parents, children) and more distant relatives. (Like Angel MJ, I'm also a big fan of his. While reading never replaces real, live doctors, it can help you understand your doctors better & help you formulate better questions. Dr. Robert Lahita is another excellent writer. Many libraries have both.)

I've read elsewhere that autoimmunes can cluster somewhat in families, but NOT NECESSARILY the SAME autoimmune. My family seems like a good illustration: my mother had many signs of APS (she wasn't Dxed as having it but did require Coumadin for decades); my sister has a thyroid condition; and I have Ro-lupus. But good drs. won't narrow thinking to a single choice too quickly, but instead will follow the symptoms...

I didn't do well on BC pills either, but I suspect this is so for many women, not just those with lupus.

I hope you post updates about your sister when you can & let us know how you're doing, too, of course! Warm wishes to you both, from Vee

 
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