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Hello I'm New Here

474 Views 17 Replies 9 Participants Last post by  iksyfaye
Hello Everyone,

I actually joined up a while back but kept postponing introducing myself. I had a bad lupus attack several years ago - near kidney failure, blood clots, a heart attack (from the blood clots) and suffered a lot of side effects on the medication. I think I was on 17 meds at one time!

Now I'm doing better thanks to the medication and my doctors. I've been on chemo - cytoxan (didn't help) but the Rituxan seems to have helped, particularly my kidneys. I am currently taking Cellcept, Plaquenil, Enalpril (for blood pressure for the kidneys) and Coumadin (for blood clotting). I am also on clonapin for anxiety and about to start Welbutrin for depression. I'm going through early menopause (the cytoxan destroyed my ovaries and I couldn't get the injection that protects them because it thickens the blood) and trying to find out if estrogen therapy is bad for lupus. So far I've read that it is; the lack of estrogen in my body is really driving me crazy!!! :( If anyone has personal experience with this or can direct me to the right thread I would appreciate it.

I hope to find support and information here and also provide the same. I've been through the ringer and hope that I can be helpful to others.

Take care,
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Hi Cynthia,
We also share some things...I had total hyster with both ovaries removed when I was 40...I am on an estrogen is considered a "natural" estrogen, in that it is estriol...and since it is a patch, it is better at bypassing the liver...My Dr. has just recently added a topical compounded cream with progesterone/testosterone. I am not sure that the recent additions are helping yet...I do know that when I don't use the estrogen patch...well...I'll just say I cannot even hardly "stand myself" addition to my recent diagnosis of SLE and Sjogren's I also have a bladder disease (IC), and low estrogen can make it much worse. Before my hyster, my Ob-Gyn had always said she hoped I would never need one, as the lack of estrogen would be rough with my IC. I ended up with a solid ovarian mass, and I had no choice. I do have high cholesterol, have had for years, and cannot take any of the meds for it ( it is misleading to think that if one is thin that their cholesterol would be ok, I am proof of that!)...I did worry about the estrogen, and risk of clots more because of my high cholesterol. However, I was told that estrogen can sometimes have a lowering effect on it...and for me that has been the levels have come down about 50 points...I cannot say for sure why...but am glad they have...
Anyways, I did read where you do have APS, and I know you and your Dr. are the best judge of what is best for you...Just wanted to share a little about me, it may help someone else.??..
Good luck to you!
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