Anyone else using Estriol? - Multiple Sclerosis Message Board

tuckersmom · 08-24-2007, 05:15 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

MSNik · 08-25-2007, 06:14 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

Barbbelle · 08-25-2007, 06:21 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, 06:23 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.

MSNik · 08-25-2007, 07:48 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