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earthling
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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,
Cynthia
 

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Hello Cynthia and welcome :)

I'm afraid I don't have any experience with your specific questions but just wanted to say hello and welcome you here.

bye for now,
Katharine
 

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Hi Cynthia and glad you decide to jump in and join us. Wow, you sure have been through a lot and for that I am sorry.

I was on Lupron injections years ago but for female issues, however, I had a total hysterectomy at the age of 36 and it put me right into menopause. It was not fun, one heck of a roller coaster ride for sure.

I do not take estrogen, never did, but I am sure your gp or rheumy could better advise you if you can safely take it with lupus and the other drugs your currently taking.

I hope your health is more stable now and life is a little kinder to you these days. Come join us in the chat room sometime.

Hope to get to know you better. You will find this forum a awesome place to hang out, full of great info, support and good people.
 

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Hi Cynthia, Boy you sure have been thru the wringer! We share a few things ..I am on Cellcept and Klonopin. Tried Welbutrin but could not keep it down. I have had Lupus For 11 years. In 1982, I had a hysterectomy. I did fine for years, without hormone replacement. After I was dx with SLE, I started having terrible hot flashes, being a teacher and turning red and sweating profusely was not good!! Anyway, I was on estrogen for several years up until the controversy started about the side-effects, the OBGYN took me off of them.Have you talked to an OBGYN. about your problem? Best Wishes, Rosie
 

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earthling
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Discussion Starter #5
Katharine;538965 said:
Hello Cynthia and welcome :)

I'm afraid I don't have any experience with your specific questions but just wanted to say hello and welcome you here.

bye for now,
Katharine

Hi Katherine,
Thanks for the welcome!
 

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earthling
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Discussion Starter #6
KarolH;538966 said:
Hi Cynthia and glad you decide to jump in and join us. Wow, you sure have been through a lot and for that I am sorry.

I was on Lupron injections years ago but for female issues, however, I had a total hysterectomy at the age of 36 and it put me right into menopause. It was not fun, one heck of a roller coaster ride for sure.

I do not take estrogen, never did, but I am sure your gp or rheumy could better advise you if you can safely take it with lupus and the other drugs your currently taking.

I hope your health is more stable now and life is a little kinder to you these days. Come join us in the chat room sometime.

Hope to get to know you better. You will find this forum a awesome place to hang out, full of great info, support and good people.
Hi Karol, thank you so much. I'm curious why you didn't take estrogen? Sorry to hear about the menopause; how long did it last and how did you deal with it? Definitely a rollercoaster ride!
 

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earthling
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Discussion Starter #7
ROSJAC;538975 said:
Hi Cynthia, Boy you sure have been thru the wringer! We share a few things ..I am on Cellcept and Klonopin. Tried Welbutrin but could not keep it down. I have had Lupus For 11 years. In 1982, I had a hysterectomy. I did fine for years, without hormone replacement. After I was dx with SLE, I started having terrible hot flashes, being a teacher and turning red and sweating profusely was not good!! Anyway, I was on estrogen for several years up until the controversy started about the side-effects, the OBGYN took me off of them.Have you talked to an OBGYN. about your problem? Best Wishes, Rosie
Hi Rosie, thanks for replying. Oh the hot flashes are the worst! I used to hear about it and think 'what's the big deal, it could be fun'. It's the weirdest feeling, like you're a furnace burning up from the inside. Did you find that the estrogen helped you through the menopause while you were on it?

I talked to my lupus dr. this morning and she told me I also shouldn't go on it because it causes blood clotting; she set me up with a gyno but that isn't for another 2 months. The menopause feels so awful though!
 

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The Other Illinois Tammy
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Cynthia,
Hi and welcome to the site, You poor thing it sounds like you just need a group hugs so here is one from me to you. I have not had things as bad as you but did have my 2 children and then under went a hist. at age 22. I know that the body can do weird things and all I can tell you is to ride it out for the mean time. You might ask about some natural hormone supplements that might not be so bad for the lupus. I know there are a couple on the open market in the US. I would ask the doctor first.
There is a chat room that I hope you will join us in and share with us and feel free to ask all the questions you want. You will find a lot of people in there that you will grow very close to in a matter of minutes. I hope you start feeling better soon and that you find away to do everything you would like to do.
 

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Hi Cynthia and welcome,

It sounds like you have had a pretty horrible time with your Lupus but I am glad that the Rituxan seems to be helping things a lot for you now.

Do you have APS (clotting antibodies) or have you ever had a TIA/Stroke/Thrombosis episode? If the answer is yes then they usually consider taking estrogen based HRT a nono...........if the answer is no then it's generally considered quite safe to take it, unless you have strong family history of clotting events or breast cancer.

love
Lily
 

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Hi Cynthia,
I was on hrt for 16 years. I was put into medical menopause by the methotrexate at 38. I developed 3 stress fractures in 3 months in both legs. I was also showing with severe osteoporosis at that point. My gyn looked at the problem and said I was going on hrt. We stayed with it due to other health issues and I was doing ok. A side benefit was that the osteoporosis reversed and went back to normal levels. I went off the hrt the first of the year. I have done ok so far, a bit of adjustment, but nothing major.

Would I do it again? Yes. I felt better on it and my gyn felt it was worth the risk. My mammograms have all come back ok. My gyn issues have a long history and it was keeping them on an even keel. So, for me, it was the right choice.
Sally
 

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Me again. Yes the estrogen did control the hot flashes,but now I have terrible night sweats from Cellcept. As they say "If it's not one thing, it"s another"! Take care, Rosie
 

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Administrator
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:welcome: Cynthia,

I am glad you decided to join us.

Sorry to hear you are having such a difficult time with hot flashes. Your doctor might be able to help with other things besides HRT. I have read the drug Neurontin has been successful for some. Many people go the natural route using soy products, cutting out caffeine, increasing their exercise level, and so on. I hope you will be able to find something that works for you.

Take care,
Lazylegs
 

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earthling
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Discussion Starter #13
Thank You Everyone

Hi again,

Thank you for all the warm welcomes and advice! :):):) I look forward to chatting with you. This is a great board - wish I had come here a lot earlier!

Take good care everyone,
Cynthia
 

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earthling
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Discussion Starter #14
onetay;539004 said:
Cynthia,
Hi and welcome to the site, You poor thing it sounds like you just need a group hugs so here is one from me to you. I have not had things as bad as you but did have my 2 children and then under went a hist. at age 22. I know that the body can do weird things and all I can tell you is to ride it out for the mean time. You might ask about some natural hormone supplements that might not be so bad for the lupus. I know there are a couple on the open market in the US. I would ask the doctor first.
There is a chat room that I hope you will join us in and share with us and feel free to ask all the questions you want. You will find a lot of people in there that you will grow very close to in a matter of minutes. I hope you start feeling better soon and that you find away to do everything you would like to do.
Hi Tammy, hug back. :) Did you go into menopause right after your hist? My dr. told me not to go on estrogen because of the blood clotting, but to try out progesterone cream to help balance the estrogen. I actually did that, along with soy powder a couple of years back when I was on cytoxan - my periods had disappeared for a while but with that it came back. Not sure why the progesterone would work now because my estrogen levels are so low but I'm giving it another try. Sorry about the blabbing. Other questions about early menopause - how long did it last, and did you notice any skin changes? My skin has gotten dryer and I've gotten some age spots.

I would love to join in on the chat room and will do so when I'm feeling less crazy!
 

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earthling
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Discussion Starter #15
Lily;539017 said:
Hi Cynthia and welcome,

It sounds like you have had a pretty horrible time with your Lupus but I am glad that the Rituxan seems to be helping things a lot for you now.

Do you have APS (clotting antibodies) or have you ever had a TIA/Stroke/Thrombosis episode? If the answer is yes then they usually consider taking estrogen based HRT a nono...........if the answer is no then it's generally considered quite safe to take it, unless you have strong family history of clotting events or breast cancer.

love
Lily
Hi Lily, unfortunately I do have APS...my lupus dr. really doesn't want me to go on estrogen. If the soy powder and progesterone and lifestyle changes don't work I am wondering if I should take the risk and do it (maybe increase my blood thinner?) - quality of life vs. quantity...
 

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earthling
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Discussion Starter #16
ROSJAC;539083 said:
Me again. Yes the estrogen did control the hot flashes,but now I have terrible night sweats from Cellcept. As they say "If it's not one thing, it"s another"! Take care, Rosie
Hi Rosie, I'm sorry to hear that, I didn't know that was a side effect from Cellcept. I was at the Vitamin Shoppe today and noticed they have vitamins specifically for hot flashes...
 

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earthling
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Discussion Starter #17
lazylegs;539100 said:
:welcome: Cynthia,

I am glad you decided to join us.

Sorry to hear you are having such a difficult time with hot flashes. Your doctor might be able to help with other things besides HRT. I have read the drug Neurontin has been successful for some. Many people go the natural route using soy products, cutting out caffeine, increasing their exercise level, and so on. I hope you will be able to find something that works for you.

Take care,
Lazylegs
Hi Lazylegs, I'm not sure if I want to go on another med, but thanks, I will check it out. Definitely no more coffee for me. I'm also quite sedentary and know I need to get off my lazy butt! I'm sure exercise will make a difference.
 

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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 patch...vivelle-dot...it 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"...lol...In 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 case...my 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!
I
 
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