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Old 02-07-2008, 04:22 PM #11
Jules A Jules A is offline
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Thank you for sharing this. Didn't I read somewhere that they are doing a study on MS and this drug? The htr is concerning although if I had severe symptoms and this relieved it, I'd sure take that chance.

I've always felt there was some sort of hormonal link because of the fact that women get it more often than men and also the pregnancy reports of either a really easy time or a really rough one. Sure could just be a coincidence but I was on BC pills for 20 years and didn't get dx'd until I was off them for aprox 5 years.
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Old 02-08-2008, 12:13 AM #12
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Originally Posted by Debbie D View Post
Actually, estrogen HRT alone isn't as dangerous as the combination of estrogen (estriol) and progesterone...so get advice before combining those two drugs. Those two together is what is worrying drs about breast cancer/heart disease.
Gosh, I'm reading such mixed reviews. I thought the unopposed estrogen was risky. Can you give me a link for the info you saw - I'd like to read that very much!

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I'm glad you posted this thread

I just received in the mail a flyer from NMSS about an upcoming lecture in my area..
"The Promise of Now:Estriol and Emerging MS Therapeutics"

I don't think I'd be able to make the event, but it got my mind to thinking! See, I'm most worried about what may or may not happen to me once I hit menopause. And had just voiced this concern to a friend of mine, and poof this arrives in the mail

MizBarbie-I find it wonderful how much better you are feeling!! Thanks a million for this thread!!!

Is this more for women heading towards the menopause years? If so, this sounds sooooo very promising. Right now, I'm only in my early 30's and have a little ways to go and am feeling alright physically with my MS. However, I worry about the future....I can tell anyone firsthand....there is NOTHING in the world like being a pregnant MS woman!! Those pregnancy hormones are quite something! Man, I'm glad that they are focusing their research into some real life relief for us!!
Thank you!

The women in the study done by Dr. Voskuhl ranged in age from 18-50. I'm 42 and showing no signs of perimenopause yet (and being on the estriol, maybe I won't at all). Thank you for sharing the info from the NMSS. I hope they make transcripts available.
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"Thanks for this!" says:
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Old 02-08-2008, 12:47 AM #13
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Originally Posted by Jules A View Post
Thank you for sharing this. Didn't I read somewhere that they are doing a study on MS and this drug? The htr is concerning although if I had severe symptoms and this relieved it, I'd sure take that chance.

I've always felt there was some sort of hormonal link because of the fact that women get it more often than men and also the pregnancy reports of either a really easy time or a really rough one. Sure could just be a coincidence but I was on BC pills for 20 years and didn't get dx'd until I was off them for aprox 5 years.
Yes, there are clinical trials taking place at 7 sites in the US over the next 2 years (see post #1).

I'm glad I'm risking it, because it's doing very good things for me.
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Old 02-18-2008, 02:25 PM #14
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Default MS and my hormones

Well, here is my story. I was either pregnant or nursing for 5 years. During this time my MS was under perfect control. After I weaned my daughter, I went downhill quickly. It is 2 years later, and I am no longer walking or functioning. The estriol trials looked promising to me, but I am now secondary progressive and have had MS for over 20 years. I am not a candidate for most trials. I feel the estriol could be a life-saver for me (literally). Are there international pharmacies available from which I could get a suupy?

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Old 02-21-2008, 01:18 PM #15
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Well, here is my story. I was either pregnant or nursing for 5 years. During this time my MS was under perfect control. After I weaned my daughter, I went downhill quickly. It is 2 years later, and I am no longer walking or functioning. The estriol trials looked promising to me, but I am now secondary progressive and have had MS for over 20 years. I am not a candidate for most trials. I feel the estriol could be a life-saver for me (literally). Are there international pharmacies available from which I could get a suupy?

Sandy
You can get bio-identical hormones (for now) in topical cream form. The estriol in capsule form needs to be prescribed for you and supplied by a compounding pharmacy.

Googling "micronized estriol" will yield a number of suppliers of cream.

Certainly talking to your OB/Gyn about prescribing hormones is also a possibility.
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Old 02-23-2008, 07:21 PM #16
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Default micronized estriol

Thanks Barbie,

That's exactly what I did!! I've started with 1mg. and will increase slowly to the full 8mg. BTW, Dr. McCandless mailed me and said that 100mg. of progesterone must complement the 8mg. of estriol. She is an expert of bio-identical hormones.

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Old 10-28-2010, 10:52 AM #17
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Default Estirol - Hormones

I'm brand new to this site, and was wondering if you could message me in regards to so guidance on where to begin on trying to find a Dr that will possibly perscribe Estirol for me. Both tmy Neuro and OBgyn "are not comfortable" dispite me going from hardly beign able to walk, to becoming completely "normal" during pregnancy. Humph?

Thanks!

Quote:
Originally Posted by MizBarbie View Post
I keep hearing this panic about it being outlawed. That FDA thing is wanting to outlaw compounds like bio-identical hormone creams that make unfounded health claims. I expect estriol or something similar to be showing up for MS after the Phase III clinical trials (that's in about 4 years tho).

Any compounding pharmacy can order estriol by the gram and compound it into 8 mg capsules.

I'm afraid I have no clue whatsoever about the birth control thing. Sorry.

My insurance pays 1/2 of the cost of $120 for 90 capsules. That'd be $40/month out of pocket, not too steep.

It is recommended that you take a progesterone in conjunction with estriol. Unopposed estrogens stimulate uterine and breast tissue growth (not in a good way ). My prescription for 3 months worth of Provera cost $3.50 after insurance, but I think the total amount was about $10.
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