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Old 01-26-2008, 04:58 PM #1
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Default MS and estriol/hormones

I've posted elsewhere on this subject and I want to post info here to share with anyone interested. I've been taking 8 mg of estriol daily since 9/24/07 and I am a believer.

I'd also like to hear from ladies who experience symptom fluctuations during their cycle, improvement on birth control, or remission during pregnancy.

Dr. Rhonda Voskuhl did a small trial with 12 non-pregnant women ages 18-50, 6 RRMS and 6 PPMS, to see if estriol, one of the hormones only present at high levels during pregnancy, affected their disease activity. It did. All of the women who stayed with the 6 month trial (10, I believe) experienced over 80% reduction in lesion size and volumes. As a result of this success, clinical trials are now starting with estriol and Copaxone (or placebo and Copaxone) at seven centers in the US.

As for my personal results, in these past 4 months I have experienced increased sensation, coordination, balance, stamina and libido, and reduced spasticity. I'm not back to normal, but I feel like I'm well on my way. Some symptoms I've had for over two years (that I felt were permanent) actually improved - a lot. This has been a real *wow* experience for me. I haven't walked this well since 2004.

Note: HRT (Hormone Replacement Therapy) increases risks of blood clots and breast/uterine cancer. So does adding a hormone if you're pre-menopausal. I am starting a progesterone, Provera, as soon as it arrives from Medco, in order to offset that risk somewhat.

Estriol is not on formulary in the USA, but it is inexpensive ($20/mo) and available by prescription through a compounding pharmacy.

Questions? Comments? Post! or PM me.
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Last edited by MizBarbie; 01-26-2008 at 11:22 PM.
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Old 01-26-2008, 06:24 PM #2
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so I can just walk into any compounding pharmacy and ask for estriol? no rx needed?


wow!
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Old 01-26-2008, 07:13 PM #3
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Lightbulb needs RX...

but better hurry... FDA is about to squelch estriol!

http://www.fda.gov/bbs/topics/NEWS/2008/NEW01772.html

if you read the links at the bottom you will find Wyeth is at the heart of this action (makers of Premarin--who are unhappy with the loss of sales)
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Old 01-26-2008, 09:33 PM #4
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Miz Barbie,

Wow your post caught my eye. I dont have MS but I have been having all sorts of severe hormone and endocrine problems for the last 2 years. It all came crashing down 2 years ago.

And its all starting to come together.

First off I have thryoid problems and a goiter which I eventually had removed. The the sex hormones came to the forefront and are way out of balance. I think they might have been the underlying problem all together. I tracked my last year of blood tests and low and behold regardless of the day of my cycle my estrogen is low. Too low. You could say that well I am 44 and perimenopausal but its too low for that.

On Friday Doc saw the trend and tested me for another autoimmune issue which isn't rare but not talked about. OOphoritis. Similar to Hashimotos when your thyroid is attacked my antibodies, these antibodies attack your ovaries. We'll see how my blood tests come back.

Apparently I also have endometriosis which they treat with birth control pills.

But sure enough the doc put me on birth control pills and the extra estrogen sure made me feel better.

You have 3 sets of hormones that work together. Thyroid hormones, adrenal hormones and sex hormones. Its like a 3 legged stool. If one leg is off the others are too.

I am beginning to be a believer in estriol. Gonna see doc on this thrusday that specializes in it here. We'll see what it brings.

Glad to see they are doing research with MS and estriol.

I really think estrogen deficiency can make things worse.

THanks for this post!
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Old 01-26-2008, 11:30 PM #5
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Quote:
Originally Posted by Dejibo View Post
so I can just walk into any compounding pharmacy and ask for estriol? no rx needed?


wow!
Sorry for leaving that out, it does require a prescription. I have added that to my post.

Quote:
Originally Posted by mrsd View Post
but better hurry... FDA is about to squelch estriol!

http://www.fda.gov/bbs/topics/NEWS/2008/NEW01772.html

if you read the links at the bottom you will find Wyeth is at the heart of this action (makers of Premarin--who are unhappy with the loss of sales)
The article discusses "BHRT" (bio-identical hormone replacement therapy) compounds done by pharmacists, with the implication that they are dispensed without prescription. It further states that compounded medications specifically prescribed for an individual would not fall in the prohibited category. I believe that they are trying to stop dispensing of things like topical OTC creams containing bio-identical hormones like wild yam extract due to lack of proven safety. These are commonly dispensed by naturopaths, too.

We wouldn't want to hinder sales of PREgnant MARe urINe, would we.

Cute kitty!
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Old 01-27-2008, 01:20 PM #6
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Quote:
Originally Posted by shelley View Post
I am beginning to be a believer in estriol. Gonna see doc on this thrusday that specializes in it here. We'll see what it brings.

Glad to see they are doing research with MS and estriol.

I really think estrogen deficiency can make things worse.
Hi Shelley ~

Please let me know what you learn at your appointment with the specialist. I'm glad you're finally getting some answers!
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Old 02-04-2008, 02:22 AM #7
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Default where can I get estriol ????

Quick, before it is really outlawed and no longer available I want to stock up! Can you recommend a pharmacy? I also live close to Canada but I think they follow US laws when a US citizen comes up to use their pharmacies. Europe? Mexico? Reliable and safe?

I have MS and am currently unisured, between all the paperwork with the state etc. to try to get my health care covered, I found out about this and perhaps I could do this and take care of it myself. Being female it seems like a pretty good option. I am currently doing the research to see how much estriol is reliably effective as birth control too. Maybe the 8 mg will be enough, maybe I will need more, to prevent pregnancy as well (the women in my family are super fertile so I am cautious. Probably why MS was not overly common in my family history - they were all pregnant and breastfeeding a lot! Whereas at the old age of 27 I have no kids). I was on depo provera for several years which suppresses your estrogen and is all progesterone. I also did not tan. Oops on both - both those things were bad for someone prone to MS (I was diagnosed later).

Does anyone know how many mgs of estriol there are per 1000 mgs of wild yam? Because you can get powdered wild yam in capsules no problem. People use those for birth control at 1500-2000 mgs a day. However I am not finding much info on how much estriol is necessary to prevent pregnancy or how much mg estriol is in 1000 mg wild yam herb powder.

There are creams but I did the math and it would cost me $125/month.

I hope I set this up right so I get notifications of replies. If you reply and I haven't replied back in a couple days could someone please email me? it won't let me post my email in the msg as a new member but you should be able to get it off here right?

Thank you : ) -MKJ
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Old 02-06-2008, 07:26 PM #8
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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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Old 02-07-2008, 08:28 AM #9
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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.
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Old 02-07-2008, 12:31 PM #10
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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!!
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