tuckersmom
08-24-2007, 08:15 PM
Just wondering if anyone else on this board uses Estriol as a therapy as opposed to the traditional injectables like Rebif, Copaxone etc...
Lisa
Lisa
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MSNik
08-25-2007, 09:14 AM
Hi Lisa. Id like to know first of all, where you heard that Estriol could be used as a therapy. Let me tell you why Im asking.
Ive been going thru ALOT of STUFF with both my gyn and my MS specialists for the past year. Ive seen now 4 MS Specialists (even though I LOVE MINE) and Ive seen 3 Neuros (even though I keep returning to mine) and Ive seen 3 gyns (even though I love mine) JUST TO GET INFO and ALL OF IT CONFLICTS!!
Having been on birth control, which contains Estriol, for over 20 years- I NEED to get off of it. MY MS Doc says that the estriol in the b/c is protecting me from relapses. (BUT I GOT MS WHILE ON b/C for 20 years and have had numerous relapses during that time). MY GYN says the estriol found in b/c pills is NOT the same and the only REAL ESTRIOL is being pregnant, because it is the hormone the body makes when it is pregnant. The Neuro says that the amount of estriol in b/c pills is SO minimal that getting off of them shouldnt affect me one way or another!
So, Ive fought with everyone for a year, wondering if I should get off the b/c pills, chance seeing if I start relapsing, and also wondering if I should have a tubal, as I CANNOT chance getting pregnant. DId I mention Im 40 years old, and have 3 step kids, no biological children and dont want anymore kids in this house?
There is ABSOLUTELY NO claims that estrial can replace MS drugs such as injectbales that I have seen. If you know differently, please provide that info. I am on REBIF and have been for a year now. However, Ive also been on b/c per my MS specialists orders the entire time....
This has been a nightmare of a situation for me. Any additional info would be appreciated.
Nikki
Ive been going thru ALOT of STUFF with both my gyn and my MS specialists for the past year. Ive seen now 4 MS Specialists (even though I LOVE MINE) and Ive seen 3 Neuros (even though I keep returning to mine) and Ive seen 3 gyns (even though I love mine) JUST TO GET INFO and ALL OF IT CONFLICTS!!
Having been on birth control, which contains Estriol, for over 20 years- I NEED to get off of it. MY MS Doc says that the estriol in the b/c is protecting me from relapses. (BUT I GOT MS WHILE ON b/C for 20 years and have had numerous relapses during that time). MY GYN says the estriol found in b/c pills is NOT the same and the only REAL ESTRIOL is being pregnant, because it is the hormone the body makes when it is pregnant. The Neuro says that the amount of estriol in b/c pills is SO minimal that getting off of them shouldnt affect me one way or another!
So, Ive fought with everyone for a year, wondering if I should get off the b/c pills, chance seeing if I start relapsing, and also wondering if I should have a tubal, as I CANNOT chance getting pregnant. DId I mention Im 40 years old, and have 3 step kids, no biological children and dont want anymore kids in this house?
There is ABSOLUTELY NO claims that estrial can replace MS drugs such as injectbales that I have seen. If you know differently, please provide that info. I am on REBIF and have been for a year now. However, Ive also been on b/c per my MS specialists orders the entire time....
This has been a nightmare of a situation for me. Any additional info would be appreciated.
Nikki
Barbbelle
08-25-2007, 09:21 AM
Hi! Estriol is a pregnancy hormone that I took a few years ago that was made by a compounding pharmacist. It is not to replace traditional MS therapies like Rebif, Copaxone, etc. I tried it because of data that I had read that many pregnant women were symptom free their whole pregnancies and some people were getting relief from Estriol. I didn't like taking it. I felt like I was PMSy 24/7 and had really weird thoughts....like a girlfriend of my husband's from 25 yrs earlier was going to come and take him away!!! He doesn't even remember her last name or where she lived and hadn't seen her for 25 yrs, yet she wanted him in my mind. Caused a few problems as you can imagine. Of course, not everyone has that problem. I guess I'm estrogen sensitive because it wasn't the med for me. Hope this helps!! Barb
tuckersmom
08-25-2007, 09:23 PM
I will try to keep this as short as I can but here is my "story". I was diagnosed 4 1/2 years ago although they suspect I have had it since I was in my early 20's. I am 43 and will soon be 44. I, like many, knew nothing about MS. After a few weeks of crying and praying, I saw several MS specialists and chose one and began Rebif therapy. One night about 2:00 in the morning I awoke and felt a strong pull to get on the net and continue to do research as I had done many times already. I found a small study done by a Dr. Rhonda Voskul at UCLA in California. I mean small... only 6-10 subjects who were given 8 mg of estirol and nothing else. The reduction in relapes and etc... was significant. When the estriol was removed, the relapes continued as well as the lesions returned, when it was re-introduced, they again remitted. This results of this study is easily found on the net. I sent an email to Dr. Voskuhl never expecting a reply. I received an email just telling me about the study and how encouraged they all were. She encouraged me to talk to my doctor and indicated there were more trials to come. I printed out all the info. I could find and went to my neuro. . He had not heard of the study and was not willing to advise me to use the estriol. I prayed for 3 months about this. I made a PERSONAL decision and found where I could buy the estriol tablets and have been taking 8mg a day since. My neuro. has since learned of the studies and knows of the lastest trial that uses estriol and copaxone together. The results of bigger trial was very positive. I have met two others who also go to my neuro. who have read the info. as well and has spoken to him concerning this therapy.
LET ME SAY THIS VERY CLEARLY.... THIS WAS A VERY PERSONAL DECISION AND SOME MAY SAY RISKY. I AM NOT ADVISING ANYONE TO TAKE THE ESTRIOL AND NOT USE THEIR CURRENT THERAPY.
Since, I decided to go to University of Chicago and go to their head MS guru be examined and talk to him about my therapy choice. He informed me, he had been apart of one of the trials and was very encouraged about having an oral alternative to shot therapy or in addition to. I have chosen to continue the estriol for the as 4 years and am blessed to be doing very well.
I have done lots of research on estriol. I understand any risk involved and will continue to take it. The pill that is under trial right now which was invented by Dr. Voskhul is called Trimesta and is made by Pipex Pharmaceuticals here in the states. It is not available to the public yet I don't believe because it is still being used in this latest estriol/copaxone trial.
AGAIN, I REPEAT, THIS WORKS FOR ME...I STRONGLY BELIEVE I WAS LED TO THIS. I AM NOT ADVOCATING ANYONE CHANGE THEIR THERAPY. I WAS ONLY HOPING TO FIND SOMEONE ELSE WHO MAY BE USING IT.
My neuro. has asked if he could give my number to some who have inquired about it. I said yet but no one has called so far. I do not like the compounded version made here in the states. There are many other drugs out there in trials that may be good alternatives but no one knows until the trials are done.
I hope this answers your questions. Anyone can look it up and read all the info. but simply searching estriol and ms.
LET ME SAY THIS VERY CLEARLY.... THIS WAS A VERY PERSONAL DECISION AND SOME MAY SAY RISKY. I AM NOT ADVISING ANYONE TO TAKE THE ESTRIOL AND NOT USE THEIR CURRENT THERAPY.
Since, I decided to go to University of Chicago and go to their head MS guru be examined and talk to him about my therapy choice. He informed me, he had been apart of one of the trials and was very encouraged about having an oral alternative to shot therapy or in addition to. I have chosen to continue the estriol for the as 4 years and am blessed to be doing very well.
I have done lots of research on estriol. I understand any risk involved and will continue to take it. The pill that is under trial right now which was invented by Dr. Voskhul is called Trimesta and is made by Pipex Pharmaceuticals here in the states. It is not available to the public yet I don't believe because it is still being used in this latest estriol/copaxone trial.
AGAIN, I REPEAT, THIS WORKS FOR ME...I STRONGLY BELIEVE I WAS LED TO THIS. I AM NOT ADVOCATING ANYONE CHANGE THEIR THERAPY. I WAS ONLY HOPING TO FIND SOMEONE ELSE WHO MAY BE USING IT.
My neuro. has asked if he could give my number to some who have inquired about it. I said yet but no one has called so far. I do not like the compounded version made here in the states. There are many other drugs out there in trials that may be good alternatives but no one knows until the trials are done.
I hope this answers your questions. Anyone can look it up and read all the info. but simply searching estriol and ms.
MSNik
08-25-2007, 10:48 PM
Hi there. Thanks for the info and I do understand how personal and probably diffficult this decision was for you to make. I have been following the estriol/ copaxone studies, and in fact know someone who is on the trial right now. She is doing very well.
Its especially interesting to me that you were on Rebif for 4 years prior to making this decision. You and I are in the same age group, Ill be 41 in Nov. (oh my goodness, did I just admit that?). Im also on Rebif, and doing well to date...its only been a year. I have MRIs scheduled this upcoming week and a drs visit in early September to hear how things look...Im very anxious about this.
I also have my MS specialist appt in mid september, my MS doc is very much involved in the studies that are going on, and is currently doing one of the estriol only studies. He doesnt think Im a good candidate for this, as he wants me on a lower dose of estriol then my current b/c pill contains. I have been fighting to get offf birth control for so long as it is...
I wanted to ask you, with the 8 mg that you are taking, does this also work as birth control for you? I really dont know the difference between straight estriol and b/c pills....I do know that my b/c is only 3 mgs a day, and even that is wrecking havoc on my system. I couldnt handle the trial dosage...but am still intrested in how this is working for so many. Have you had any relapses since you started this therapy?
ITs all very interesting to me, and hitting close to home as I make the final commitment to do the tubal, I also want to be 100% sure that Im not going to send my body into complete relapse yet again. IF taking estrogren supplements is the way to go....I want to be informed.
Thanks for all your info.
Nikki
Its especially interesting to me that you were on Rebif for 4 years prior to making this decision. You and I are in the same age group, Ill be 41 in Nov. (oh my goodness, did I just admit that?). Im also on Rebif, and doing well to date...its only been a year. I have MRIs scheduled this upcoming week and a drs visit in early September to hear how things look...Im very anxious about this.
I also have my MS specialist appt in mid september, my MS doc is very much involved in the studies that are going on, and is currently doing one of the estriol only studies. He doesnt think Im a good candidate for this, as he wants me on a lower dose of estriol then my current b/c pill contains. I have been fighting to get offf birth control for so long as it is...
I wanted to ask you, with the 8 mg that you are taking, does this also work as birth control for you? I really dont know the difference between straight estriol and b/c pills....I do know that my b/c is only 3 mgs a day, and even that is wrecking havoc on my system. I couldnt handle the trial dosage...but am still intrested in how this is working for so many. Have you had any relapses since you started this therapy?
ITs all very interesting to me, and hitting close to home as I make the final commitment to do the tubal, I also want to be 100% sure that Im not going to send my body into complete relapse yet again. IF taking estrogren supplements is the way to go....I want to be informed.
Thanks for all your info.
Nikki
tuckersmom
08-26-2007, 10:47 AM
Nikki,
I may not have said it correctly but I was only on the Rebif for 3 months before I made the decision to stop using it and have been using only the estriol for 4 years. I have had only 2 relapses in 4 years. They were not nearly as severe as the initial attack. My biggest issues are from the bra line down. I have the tingling/numbness in my legs and torso area and at times my left leg just doesn't want to go with the program. I have had a few tingly things in my arms and hands but that only happened during the relapses. Most of the time it has all continued to be very mild and like everyone else, you just rearrange your life a little when it is a bad day. The fatigue is the biggest daily struggle. I have figured out I can be really active for 2 days, rest on the 3rd and active 2, rest on 3rd. If I can do this and take a nap, I am able to take care of our 10 acres, 9 cats (8 outside 1 handicapped inside), 3 dogs and help with assorted family things. I am not always able to stick to this and get too wore out and it takes a few days to get going again. My husband travels a great deal for his job so I take care of stuff here. I had to have hysterectomy at age 24 due to what they now call endometriosis. Back then they didn't know what to do about it. We don't have any children of our own. I was on premarin for about 10 years and then wasn't using anything. That was awful. I started using estroven over the counter and that helped the hot flashes.
So the estriol (ovestin is the name of the pill I take) helps with the hot flashes and the only side effect I have is water retention and I take something for that. It has been used in other countries for many years for menopause with great success. Along with the research findings, prayer and talking with my doctors, I believe I am doing what is best for me. I continue to pray for success with this newest trial so that there will be more options for everyone. Is the estriol what has prevented significant relapses or progression or is my MS just a benign case? I don't know with 100% certainty but I do know that I am doing what I think is right. I do think you have to listen to your doctor just as they have to listen to you but ultimately it is YOUR decision what to do. We know our bodies and lives better than anyone. I had to get pretty stern with my neuro. but he finally settled in and listened to what I was saying, read the info. and did his own research and is now better informed. He indicated that drs can't keep up on all of the latest research so it is impossible for them to know about everything so asked me to help him stay up to date. This type of relationship with a doctor may be common or not I don't know but it was worth arguing with him because now I know he listens to me.
I am sorry you are having to make more serious decisions about yet another health issue. Making decisions about MS is hard enough. I am not sure why they say you are not a good candidate for the estriol. I would go with whatever he says if you trust him. Estriol itself is simply hormone replacement. Based on Dr. Voskhul's info. "in laymens terms, taking 8mg/daily makes the body think it's pregnant, therefore, resulting in the change in pregnant women with ms when they are truly pregnant". That's what I understand.
I hope you are having a good day.
Lisa
I may not have said it correctly but I was only on the Rebif for 3 months before I made the decision to stop using it and have been using only the estriol for 4 years. I have had only 2 relapses in 4 years. They were not nearly as severe as the initial attack. My biggest issues are from the bra line down. I have the tingling/numbness in my legs and torso area and at times my left leg just doesn't want to go with the program. I have had a few tingly things in my arms and hands but that only happened during the relapses. Most of the time it has all continued to be very mild and like everyone else, you just rearrange your life a little when it is a bad day. The fatigue is the biggest daily struggle. I have figured out I can be really active for 2 days, rest on the 3rd and active 2, rest on 3rd. If I can do this and take a nap, I am able to take care of our 10 acres, 9 cats (8 outside 1 handicapped inside), 3 dogs and help with assorted family things. I am not always able to stick to this and get too wore out and it takes a few days to get going again. My husband travels a great deal for his job so I take care of stuff here. I had to have hysterectomy at age 24 due to what they now call endometriosis. Back then they didn't know what to do about it. We don't have any children of our own. I was on premarin for about 10 years and then wasn't using anything. That was awful. I started using estroven over the counter and that helped the hot flashes.
So the estriol (ovestin is the name of the pill I take) helps with the hot flashes and the only side effect I have is water retention and I take something for that. It has been used in other countries for many years for menopause with great success. Along with the research findings, prayer and talking with my doctors, I believe I am doing what is best for me. I continue to pray for success with this newest trial so that there will be more options for everyone. Is the estriol what has prevented significant relapses or progression or is my MS just a benign case? I don't know with 100% certainty but I do know that I am doing what I think is right. I do think you have to listen to your doctor just as they have to listen to you but ultimately it is YOUR decision what to do. We know our bodies and lives better than anyone. I had to get pretty stern with my neuro. but he finally settled in and listened to what I was saying, read the info. and did his own research and is now better informed. He indicated that drs can't keep up on all of the latest research so it is impossible for them to know about everything so asked me to help him stay up to date. This type of relationship with a doctor may be common or not I don't know but it was worth arguing with him because now I know he listens to me.
I am sorry you are having to make more serious decisions about yet another health issue. Making decisions about MS is hard enough. I am not sure why they say you are not a good candidate for the estriol. I would go with whatever he says if you trust him. Estriol itself is simply hormone replacement. Based on Dr. Voskhul's info. "in laymens terms, taking 8mg/daily makes the body think it's pregnant, therefore, resulting in the change in pregnant women with ms when they are truly pregnant". That's what I understand.
I hope you are having a good day.
Lisa
MSNik
08-26-2007, 11:50 AM
HI Lisa. And again, thank you. You are someone I wish I knew. I need more people like you in my life. Please dont dissappear from our board, I have a feeling you have much to share, and I have alot to learn from you!
I am walking out the door right now, with 3 kids (my stepkids) who are house happy, so right now isnt a good time for me to try to get my thoughts in line. I also want to do some research on this doctor you talked about, and see what I can find....but thank you so very much for sharing with me your situation, your honesty and your information are priceless to me. At this tough time, I really do want to be fully informed and isnt it interesting how certain doctors dont actually discuss things with you, UNTIL YOU BRING IT UP? Now, I have something else to bring up....
Ill get back to you soon. I wish you a happy pain free day!
Nikki
I am walking out the door right now, with 3 kids (my stepkids) who are house happy, so right now isnt a good time for me to try to get my thoughts in line. I also want to do some research on this doctor you talked about, and see what I can find....but thank you so very much for sharing with me your situation, your honesty and your information are priceless to me. At this tough time, I really do want to be fully informed and isnt it interesting how certain doctors dont actually discuss things with you, UNTIL YOU BRING IT UP? Now, I have something else to bring up....
Ill get back to you soon. I wish you a happy pain free day!
Nikki
Bearygood
08-26-2007, 06:20 PM
tuckersmom, great to hear your story -- and great to hear that Dr. Voskuhl wrote back to you! I'm aware of the small study and of the current one with Copaxone -- I have wondered why they are doing the combo and not just continue with a larger Estriol study as a next step.
For anyone who might be interested in more information, here is a link to the old studies (okay to post because it's from Web MD, a Healthboards partner!).
http://www.webmd.com/content/article/50/40529.htm
For anyone who might be interested in more information, here is a link to the old studies (okay to post because it's from Web MD, a Healthboards partner!).
http://www.webmd.com/content/article/50/40529.htm
tuckersmom
08-27-2007, 11:28 AM
I have wondered myself why not a larger study with just the estriol. The initial study was done that way but I wonder if using one of the injectables in the study helps to get it funded.
MSNik
08-27-2007, 12:04 PM
Thats an interesting thought, and probably right on the money.....we all know the pharmaceutical companies are the ones with the available money to fund these things....however one also has to wonder if there is something to the joint effort of using an established MS therapy drug, which helps to sway the results....since the Copaxone results are already proven, then taking copaxone WITH estriol isnt as risky for the panel, as far as the "what if it doesnt work" aspect...yes? no?
There are other studies going on, with Interferons such as Rebif, in joint ventures with blood pressure pills...again, joint ventures being the key word.
This is interesting; however, I think that the original post of using estriol is even more so...so many women are on birth control, and estriol being a key ingrediant to birth control pills...with so many women developing MS, why NOT try to get a singularly drug like Estriol approved for MS therapy?
Lets hope the "powers that be" get this straightened out in our lifetime, huh?
nikki
There are other studies going on, with Interferons such as Rebif, in joint ventures with blood pressure pills...again, joint ventures being the key word.
This is interesting; however, I think that the original post of using estriol is even more so...so many women are on birth control, and estriol being a key ingrediant to birth control pills...with so many women developing MS, why NOT try to get a singularly drug like Estriol approved for MS therapy?
Lets hope the "powers that be" get this straightened out in our lifetime, huh?
nikki
tuckersmom
08-27-2007, 04:13 PM
Amen Nikki! I think there are many "behind closed door" things that go on that we will never know about. I feel it is up to us who suffer with this or any other disease to ask and ask and ask as many questions to as many doctors, specialists etc... as we can get face to face. We have to demand answers that make sense to us and not stop until they do. I know it's exhausting and can be expensive to simply go to the doctor but we deserve answers.
I am a big "look outside the box" person. Also, a response to your statement Nikki about you could learn alot from me... first let me say thank you. That was a very kind thing to say. I have much to learn from you and everyone else. We all have experiences and info. that if we share with eachother, we can all benefit. I don't think we go through things in life, learn from them and are suppose to keep it to ourselves.
Bless all of you. Wishing you all a good week of extra laughs, hugs and love.
Lisa
I am a big "look outside the box" person. Also, a response to your statement Nikki about you could learn alot from me... first let me say thank you. That was a very kind thing to say. I have much to learn from you and everyone else. We all have experiences and info. that if we share with eachother, we can all benefit. I don't think we go through things in life, learn from them and are suppose to keep it to ourselves.
Bless all of you. Wishing you all a good week of extra laughs, hugs and love.
Lisa
MSNik
08-27-2007, 04:53 PM
Extra laughs, hugs and painFREE days back at you, Lisa.
Its an interesting place, this board. After using it for a year, I can honestly say its saved my sanity many times over. Ive made some mistakes and posted some things which were controversial, but now and then , you "meet" someone like yourself who identifies and can read between the lines...there are a few of us here who "get that".
You are very welcome for what I said..but no thanks needed. You are appreciated, and your thoughts and words are both inspriring and interesting. Thank YOU for participating!
I used to work for a major pharmaceutical company. I saw alot of things which relate to this subject, although I never actually understood alot of what I witnessed. Because I was simply an administrative assitant, I learned not to question, and only to "do". Unforutantely, I developed MS during this time, and actually had to leave the job, my typing skills were getting horrible. Most of my symptoms are in my left hand and fingers, and when things get really bad, I use voice recgonition to type..they wouldnt allow that at my old job, too much couldnt be spoken out loud...however, during that time I also graduated from college with my MBA (keep in mind, Im 40 and raising 3 stepkids and a needy husband) so that was my goal, to finish school and have something positive in my life. I did finish, last March, valedictorian of my class..I went on to get a great job in sales/marketing, which I love, (even though I hate the company I work for) and have continued to learn every day from people like yourself. It really is UP TO US to stay on top of what is going on out there....I totally agree that not only can it get expensive, but also exhausting! However, it is necessary to learning about our disease, and how to live a healthy MS life.
Thanks so much for your contributions to this!
Nikki
Its an interesting place, this board. After using it for a year, I can honestly say its saved my sanity many times over. Ive made some mistakes and posted some things which were controversial, but now and then , you "meet" someone like yourself who identifies and can read between the lines...there are a few of us here who "get that".
You are very welcome for what I said..but no thanks needed. You are appreciated, and your thoughts and words are both inspriring and interesting. Thank YOU for participating!
I used to work for a major pharmaceutical company. I saw alot of things which relate to this subject, although I never actually understood alot of what I witnessed. Because I was simply an administrative assitant, I learned not to question, and only to "do". Unforutantely, I developed MS during this time, and actually had to leave the job, my typing skills were getting horrible. Most of my symptoms are in my left hand and fingers, and when things get really bad, I use voice recgonition to type..they wouldnt allow that at my old job, too much couldnt be spoken out loud...however, during that time I also graduated from college with my MBA (keep in mind, Im 40 and raising 3 stepkids and a needy husband) so that was my goal, to finish school and have something positive in my life. I did finish, last March, valedictorian of my class..I went on to get a great job in sales/marketing, which I love, (even though I hate the company I work for) and have continued to learn every day from people like yourself. It really is UP TO US to stay on top of what is going on out there....I totally agree that not only can it get expensive, but also exhausting! However, it is necessary to learning about our disease, and how to live a healthy MS life.
Thanks so much for your contributions to this!
Nikki