Estriol

Tell us what you are using to treat your MS-- and how you are doing.

Postby cheerleader » Thu Dec 11, 2008 11:38 am

Hey gals,
I've been looking into estrogen and its affect on the vascular endothelium system. Estrogen replacement creates vasodilation (opening of the blood vessels) and changes the nitric oxide signaling in a positive way. There are many studies linking estrogen and its positive affect on the endothelium..thus the "plugging up" neuro protective action of hormonal replacement therapy. Another vascular link for women is studies of women in their third trimester and the remission of their MS. I posit it is not only the rise in hormonal levels, but the major growth in blood volume (double the amount of blood to prepregnancy levels) and vasodilation, to nourish the placenta and fetus.

The vascular connections to MS are my new area, and it was interesting to see how this is linked to hormonal levels.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Shayk » Thu Dec 11, 2008 7:59 pm

Cheer

Thanks so much for the info. :) Maybe now I can change my score on your test from +1 to 0.

All your research and support is much appreciated.

Sharon
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Postby mommasan » Fri Dec 12, 2008 8:22 am

Just checking out this forum. Wanted to post my life experiences. For 5 1/2 years I was either pregnant or nursing (nursing for 4). MS was in complete remission, eve though I'd had it for over 20 years I had no real disability. Once I stopped nursing, I became completely disabled. Rapidly, I went from being functional to using a cane, and only being able to walk a few steps, not being able to cut my food, wearing diapers. I couldn't believe how fast I went downhill. I had the Revimmune treatment in June and have gotten back some function, but not nearly as much as I need.

Hormones were the key in my case to keeping the MS at bay. Pregnancy was helpful, but nursing was dramatically effective. I should not that I had enough milk for 6 babies. I was pumping and dumping over 40 ounces of excess milk a day and was still engorged. My oversupply was unheard of. My prolactin levels must have been thru the roof. Maybe I should ask the doc's at Hopkins for a script for estriol during my next visit as my symptoms have been lousy lately?

Sandy
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Postby cheerleader » Fri Dec 12, 2008 11:04 am

mommasan wrote:
Hormones were the key in my case to keeping the MS at bay. Pregnancy was helpful, but nursing was dramatically effective.

Sandy


Sandy- oxytocin (the good lovin' hormone) is also plentiful when breastfeeding, and has a very strong effect on your vascular system, causing vascular relaxation, dilation of vessels and enhanced nitric oxide signaling. It might be really beneficial for you to look into hormones to help get your MS into remission. Do you think the docs at JH would write some scrips for you? Hope you find some answers-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Shayk » Fri Dec 12, 2008 8:36 pm

Sandy

I agree with Cheer that it might be beneficial for you to consider hormones.

I was at Hopkins about 5 years ago to confirm my diagnosis and to get a script for estriol. No problem confirming the diagnosis but the neuro I saw definitely dissed estriol. I moved on.

I haven't a clue if estriol is compatible with Revimmune but if you're at all interested I think it would be worthwhile to ask JH about it and proceed from there.

Wishing you the best

Sharon
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Postby 3dognight » Mon Dec 15, 2008 12:02 pm

I went today to see an OB/GYN about getting a prescription for Estriol and she said she couldn't prescribe it. The only thing she would prescribe would be an HRT which has .5mg of drospirenone and 1mg of estrodiol. Possibly increasing the estrodiol to 2mg after a month.

I live in a small community, how do you find someone to prescribe Estriol? Also, her question was how much progesterone should go with it? Is it possible to contact Dr. Voskuhl or some other person leading in the research to get more information to my Doctor?
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Postby DIM » Mon Dec 15, 2008 2:09 pm

Prolactin have found to be benefficial in MS as all other pregnacy hormones, progesteron and estrogen!
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Postby CureOrBust » Mon Dec 15, 2008 5:18 pm

DIM wrote:Prolactin have found to be benefficial in MS as all other pregnacy hormones, progesteron and estrogen!
I remember reading this fact also, but when I researched into it further, I kept coming across articles that said Prolactin caused permeability in the BBB (or something to that effect).
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Postby DIM » Tue Dec 16, 2008 12:29 am

...exactly, prolactin along with pregesteron and estrogen at balanced levels have the benefficial effect and non prolactin by itself!
The key word here is balance, there are many studies that mention increased progesteron levels may worsen MS while progesteron with estrogen increases myelination.
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Postby CureOrBust » Tue Dec 16, 2008 5:06 am

What it takes with one hand...
http://en.wikipedia.org/wiki/Prolactin
WikiPedia wrote:Prolactin provides the body with sexual gratification after sexual acts: The hormone counteracts the effect of dopamine, which is responsible for sexual arousal. This is thought to cause the sexual refractory period.[3] The amount of prolactin can be an indicator for the amount of sexual satisfaction and relaxation. Unusually high amounts are suspected to be responsible for impotence and loss of libido (see hyperprolactinemia Symptoms). Prolactin also stimulates proliferation of oligodendrocyte precursor cells. These cells differentiate into oligodendrocytes, the cells responsible for the formation of myelin coatings on axons in the central nervous system.[4]
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Obtaining Estriol

Postby Shayk » Sun Feb 22, 2009 5:11 pm

Peggy

I am so sorry I didn't see your questions until now. :oops:
My questions are: with the FDA position on bio identical hormones, is it still possible to get Estriol from a compounding pharmacy. And for those of you who do take it, how long before/if you notice any improvements?

Yes, it's possible to obtain estriol. Here's the FDA link on the topic: Obtaining an IND for Estriol

I'd say it was about 3 months before I noticed an improvement in symptoms.
I live in a small community, how do you find someone to prescribe Estriol? Also, her question was how much progesterone should go with it? Is it possible to contact Dr. Voskuhl or some other person leading in the research to get more information to my Doctor?

If there's a compounding pharmacy or naturopath in your community I'd contact them and ask if they know physicians who might prescribe. I'll also pm you with some info.

Personally I think the progesterone dose should be based on the results of your hormone testing (which I highly recommend). Turns out I had zip and ultimately ended up on 500 mg.

I haven't been in contact with Dr. Voskuhl. But, here's some info that hasn't been posted in this thread (not specific to estriol though):

ACTRIMS 2007 Program

P20 (on page 47 of the program) HRT Contributes to Neuronal Health in Postmenopausal Women With MS
Kathleen Fuchs, PhD
University of Virginia, Charlottesville, Virginia, USA

Oral estriol treatment is associated with a decrease in number and volume of gadolinium enhancing lesions on MRI. This suggests that estrogen products offer some degree of neuroprotection. To date, it has not been demonstrated if postmenopausal women with MS derive disease-modifying benefit of hormone replacement therapy (HRT).

Objectives
: In a pilot study of postmenopausal women with MS, 1H MR Spectroscopy (MRS) was used to compare the level of N-acetylaspartate (NAA)—a putative marker of neuronal integrity—in women with and without HRT.

Methods:
We evaluated 16 women with clinically stable MS—8 on HRT, 8 not on HRT.

Results:
The groups were comparable in age (mean��50.5 years, p��0.07) and disability level as assessed by the MS Functional Composite (mean z��0.08, p��0.72).....

There was a significant difference (p��0.015) in the NAA/Cr ratio between the women on HRT (1.91��0.39)and the women not on HRT (1.41��0.32).

When age, level of disability, and use of immunomodulatory therapy were used as covariates in the statistical analysis, the significant difference between the groups remained.

Conclusions: In this small sample, we demonstrated that use of exogenous estrogen may contribute to neuronal health as measured by MRS. These findings will need to be replicated in a larger sample to determine if the benefits of HRT outweigh the risks in this population.

Now, I wanted to let everyone know that they're still recruiting for the estriol trial.

MS Trial Alert: Clinical Trial of Sex Hormone Estriol Recruiting Women with MS to Participate - Updated

"Estriol treatment also has the potential to be more potent in halting disability in MS, since estrogens have been shown in animal models to be not only anti-inflammatory, but also to directly reduce brain injury."

Again, so sorry Peggy for the "slow" response.

Sharon
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Postby 3dognight » Mon Feb 23, 2009 8:38 am

Hi Sharon:

Thanks for the reply, better late than never.

Yes I was finally able to get a prescription for Estriol about 2 weeks ago. The OB/GYN emailed my neuro about it. I'm not sure what she wrote, but his office called and wanted me to bring in copies of all my research to him which I did. Finally he called me back in and said that he wasn't convinced since most initial trials hand pick people they think will give them good results and he couldn't find any published results on the trial in progress, but he would write the prescription for the estriol and I was then to contact the OB/GYN about the progesteron. She gave me a prescription for Nora-Be. I noticed at the compounding pharmacy that they do hormone testing and I think I will arrange to do that and get the results to the OB/GYN as I'm not sure that this is quite right. This only took me 2 months to get accomplished. My last resort was to see a naturopath that would not be covered by my insurance, but I was willing to do that and had an appointment arranged.

My neuro wants to do a complete MRI again this summer, plus he suggested that when 4-ap is FDA approved, that I should consider that. The compounding pharmacist, saying she didn't want to be too nosy but was curious, asked me why a neurologist was prescribing hormones.

Now my new problem is that my liver enzymes are elevated. (I'm on Rebif.) Neuro told me not to take the estriol which I'm not sure has anything to do with it since I hadn't taken any before the test. My guess is that taking hormones puts an additional strain on the liver? Also told me to decrease my alcohol consumption. OK, I have 2 drinks on Saturday night but I've stopped that as well as taking any NSAIDS, which I've been taking two Aleves the nights I do my shots to relieve the flu symptoms. I'm also cutting my 10mg Lexapro pills in half to wean myself off of them. I'm continuing to take the estriol even though he said not to. I will have another blood test in about a week.
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Postby Arcee » Mon Feb 23, 2009 9:25 am

Just in case it might help - - when an interferon made my liver enzymes high, in addition to stopping the interferon, I took a lot of milk thistle which helped bring them down.
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Postby 3dognight » Mon Feb 23, 2009 11:51 am

I have been taking 350mg of milk thistle for the last two months but it must not be helping enough as the numbers keep rising. A friend of mine who's husband went through cancer treatment (didn't make it), suggested SAM-E.
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Postby DIM » Mon Feb 23, 2009 1:52 pm

Try 3 times per day the milk thistle and add >200mg alpha lipoic acid and >1200mg N-acetyl cysteine daily, my wife has had high her liver enzymes and they settle down with the above!
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