Estriol

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

Postby Shayk » Mon Feb 23, 2009 8:13 pm

Hey 3dognight

Seems like you've gotten good ideas about other things to try re: the liver and so happy to learn you got the estriol script--and in less time than it took me, which was about a year.

Hormones do impact the liver and I've read that some physicians recommend the "mode" of hormone administration be via patches or creams as a way to bypass the liver --but that's not something I've explored.

I know nothing about "Nora-be"--but I think it's worthwhile to consider checking with your OB/GYN about bio-identical progesterone and the brand name I've seen is "Prometrium".

And, before your physician prescribes the 4-AP, you may have some time to consider if the progesterone actually helps with your walking--especially if you have your hormone levels tested and find that your progesterone level is low.

As a non-medical, non-scientific lay person, it seems to me on the surface that 4-AP and progesterone share a similar mode of action, that is blocking "K+channels".

I haven't really kept up with 4-AP, but from this abstract I take it to be a K(+) channel blocker, as is progesterone (and, the progesterone might have fewer side effects)

Fampridine-SR for multiple sclerosis and spinal cord injury
Randomized clinical trials completed to date indicate that this form of K(+) channel blockade may be useful for the improvement of walking ability in patients with multiple sclerosis.

A nongenomic mechanism for progesterone-mediated immunosuppression: inhibition of K+ channels, Ca2+ signaling, and gene expression in T lymphocytes .
Progesterone effectively blocked a broad spectrum of K+ channels, reducing both Kv1.3....

We propose that direct inhibition of K+ channels in T cells by progesterone contributes to progesterone-induced immunosuppression.

And, if you haven't read it yet, I think you might find "The MS Solution: How I Solved the Puzzle of My MS", by Kathryn Simpson a good resource. It's primarily focused on hormones--but includes info on diet, exercise, supplements, etc. that you might find helpful.

Best to you--I hope you're able to work it all out.

Sharon
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Postby 3dognight » Tue Feb 24, 2009 8:44 am

Sharon:
You amaze me with your knowledge, I feel like just a simple farm girl when I read your posts, well because I am a simple farm girl. I miss not being able to ride my horses. They are all trained to leg signals and when one leg doesn't work right and is unpredictable, you sometimes get some exciting responses from the horse that you need balance for to ride through.

Nora-be contains 0.35mg of norethindrone. I'm going to contact the compounding pharmacy today about the hormone test.

I know this is digressing from the subject a bit, but starting today based off of the liver enzyme question, this is my regimen on top of my prescriptions for Rebif, Baclofen, clonazepam, Lexapro, estriol and Nora-Be (I'm working my way off of the Lexapro, didn't know I was depressed until they told me so).

Before breakfast:
SAM-e 200 mg
N-acetyl cysteine 600 mg
milk thistle 350 mg

With breakfast which is a smoothie made from tart cherry and pom juice, non-fat yogurt, cinnamon, rasberries, marionberries and blueberries:
Multi vitamin
Calcium/Magneseum 1200/600 liquid
D3 liquid 1000 IU
B12 5000mg (the methyl form)
Acetyl L-Carnitine 500mg


After lunch:
milk thistle 350 mg
D3 2000 IU
Vitamin C 500mg

30 minutes before dinner:
SAM-E 200 mg

Before bed:
milk thistle 350 mg
N-acetyl cysteine 600 mg

This is mostly built on what I have read that others are taking. I do plan on purchasing the book you suggested. I also have a suntan canopy that I try to use 3 times a week. Not too much sun in Oregon in the wintertime.

Peggy
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Postby Cabbage » Mon Mar 02, 2009 11:46 am

Hello All,

I've been eavesdropping on this forum for a couple of months and thought I should finally join up and jump in.

Sharon, your first post from 2007 really caught my eye. You say that your MS symptoms started after quitting HRT, at age 57. I was diagnosed last year (I'm 48 now), but my problems began four years ago, after surgery to have one ovary removed.

I say "problems" instead of MS, because the problems seemed more symptomatic of a immune system in an inflammatory state, than MS specifically. Within a week of the surgery I got pleurisy (an inflammation of the membrane surrounding the lungs). This was followed by a two month bout of diarrhea which looked an awful lot like irritable bowl syndrome. Following that, I got every bug going around. All said, I was sick more days than I was well for about 9 months.

It wasn't until a year later that I experienced something which could, in hindsight, be identified as an MS symptom--slight urinary incontinence. And this coincided with my first peri-menopausal hot-flashes.

So, for me, dropping estrogen levels have been very entwined with my MS.

I'd be very interested to hear from other women with late-ish onset MS. I wonder if, in a subset of women, our estrogen levels as young women were immuno-protective.

I got a hold of some estriol pills from Europe, and just 2 weeks ago started taking 4mg a day (I am easing up to 8mg). I also take Prometrium (micronized progesterone) 10 days a month.

Before estriol, I was using a Vivelle estradiol patch, which I liked quite a bit. I switched to estriol because Rhonda Voskhul's research out of UCLA is so compelling. I consider estrogen to be a critical piece of my MS treatment.

I hope all that wasn't too long for my maiden post!

--Lisa
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Postby Shayk » Wed Mar 04, 2009 6:30 pm

Lisa

Welcome to ThisIsMS and to the estriol thread. Your first post was great and I too would like to hear from more women who were diagnosed at a later age.
I wonder if, in a subset of women, our estrogen levels as young women were immuno-protective.

I think that's entirely possible. Here's one interesting study that I think reinforces your idea:

Recent use of oral contraceptives and the risk of multiple sclerosis
RESULTS: The incidence of MS was 40% lower (odds ratio, 0.6; 95% confidence interval, 0.4-1.0) in oral contraceptive users compared with nonusers during the previous 3 years.

And quite anecdotally and I'm obviously biased, it seems purusing MS boards that it's not unusual for women to transition to SPMS during peri-menopause or to have worsening symptoms at menopause. To echo you
So, for me, dropping estrogen levels have been very entwined with my MS.

Maybe it is for others as well ??? and hopefully they'll chime in. I hope the estriol goes well for you--definitely keep us posted and thanks for sharing your info. I definitely don't think your post was too long.

Take care

Sharon
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estriol

Postby brazill » Tue Apr 12, 2011 11:19 pm

Hi ,

I wonder if anyone knows what is the status of the estriol research .

I'm from australia. I'm trying to get the estriol over here.
so far I got a price offer from compounding pharmacy.
Is there a similar product that is being sold in europe ? If so , what is the name of it ?

so far I went to a gyno. who wants me to put a device in the womb that supplies progesterone. by doing that he believes that even if I'll take estriol I'll be protected.

I'll be happy to know your opinion .

Thanks
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Postby Cabbage » Wed Apr 13, 2011 8:48 am

Rhonda Voskuhl is the lead researcher in a estriol/copaxone trial scheduled to conclude in 2013: http://clinicaltrials.gov/ct2/show/NCT00451204

If you google her you can find many research articles on estriol and sex hormones. She wrote an interesting review recently, "Sex differences in autoimmune diseases": http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022636/

I get my estriol from Germany, I trust the quality-controlled, prepackaged, medicine more than that coming from a compounder--less mistake prone. It's called Jenapharm. It's their standard HRT.

Yes, you should take progesterone with estrogen, if you have a uterus.

Good luck!
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Estriol

Postby Shayk » Wed Apr 13, 2011 10:11 am

Hi Brazill and Cabbage

Welcome to TIMS...I would just add that I think it's smart to have your hormone levels tested and to be "in balance". I don't know if putting a device in your womb for the progesterone will be sufficient or not.

Personally my testing indicated I had zero progesterone and capsules did not raise my progesterone levels, but topical cream did. Progesterone is also very neuroprotective--I'm on 500 mg.

And, since I haven't posted on hormones in a while, here are a couple more interesting (IMO) tidbits.

Estrogen enhances neurogenesis and behavioral recovery after stroke

Estrogen-induced protection against experimental autoimmune encephalomyelitis is abrogated in the absence of B cells
E2-primed B cells may represent an important regulatory mechanism in MS and have strong implications for women receiving current MS therapies that cause B-cell depletion

The way I interpret it (could be right or wrong) is that women may want to consider MS treatments other than those that cause B-cell depletion.

All the best to you. Let us know how you do.

--sharon
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Jenapharm

Postby brazill » Wed Apr 13, 2011 4:03 pm

Hi cabbage and sharon,
Do you know how much ml a daily doze of estriol contains in Jenapharm ?
How long are you on it ? Could you notice a difference ?

I tried asking for hormone levels to be checked. But for some reason the dr said it's not needed.
I feel that he wants me to do all the homework and just come and ask from him what I want in terms of prescription. I don't know on any dr that combines the 2 diciplens.

I'll keep you posted.
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Re: Estriol

Postby imMSunderstood » Sat Apr 28, 2012 8:50 pm

I definitely see a hormonal component to my MS. I am a lot like a few women here who have posted in the past. 19 years ago I had Optic Neuritis I had just started taking Birth Control. The ON went away almost in a blink of the eye. I developed tingling almost 8 months later and even that went away after a while. Then nothing but fatigue that was annoying but didn't completely stop me. So for 15 years I lived a relatively MS free life and in fact couldn't even get a diagnosis. Not that I was shopping for one but I had a strong clue that MS was in my cart. In any event a few months after I had stopped nursing my second child the tingling came back and then it stopped after going back on Birth Control. Fast forward 5 years after weaning my third child I noticed dizziness upon standing and then my leg wouldn't hold a yoga position (warrior 1) any more now 5 years later of being off of all birth control I steadily go downhill. I'm in a pattern of being laid up every month in bed for 2 days followed by a week of feeling of being under an MS assault. Extremely weak and off balance can't walk far. Sensations coming back etc. Then I have about 10-15 days out of the month where I feel almost normal at least above the neck and definitely improved below the neck. My nuero could care less about my suspicions and my chiro is suspect of the Trimesta study because it is funded by a drug company. I am going to beat on another naturopath's door here very soon and I hope someone will listen to us. God gave us women intuition along with these hormones and we have to learn to use our hormonal irritability to take our intuition into battle with us. We have got to beat the drum louder and louder until they hear us.
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Re: Estriol

Postby Shayk » Wed Apr 30, 2014 9:52 am

:-D Here I am beating the drum.

In light of the news about estriol (a very long time coming) I want to bump the thread. Here’s a link to the news release from the NIH Preliminary Results Show Improvement in MS Symptoms (One has to wonder why they don’t identify estriol in the title???)
Combining the estrogen hormone estriol with Copaxone, a drug indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS), may improve symptoms in patients with the disorder, according to preliminary results from a clinical study of 158 patients with relapsing remitting multiple sclerosis (RRMS).

I continue on 8 mg. estriol/500 mg progesterone ( diet, exercise, supplements and Copaxone) and all things considered think I’m doing ok (guess EDSS 0-1).

Since it’s been a while since I posted a lot about hormones—to those of you who are new, here are links to some of the articles about hormones and MS.

Neuroprotective Effects of Estrogens and Androgens in CNS Inflammation and Neurodegeneration (full article available)

Estrogen and Testosterone Therapies in Multiple Sclerosis(full article available)

Estrogen Treatment in Multiple Sclerosis(full article available)

And, since some are interested in targeting B cells, I wanted to post this article too: Oestrogen treatment of experimental autoimmune encephalomyelitis requires 17β-oestradiol-receptor-positive B cells that up-regulate PD-1 on CD4+ Foxp3+ regulatory T cells (full article available) I thought it may be of interest to folks considering neuroprotection with estrogens.

As I continue to think they don’t know the cause of MS, I chose to focus on neuroprotection years ago. Maybe, just maybe….it will pay off… I think so far it has. And, another thing to think about, does the decline in hormone levels with age (and hence neuroprotection) contribute to disability since MS disability is age related? The unknowns continue……and I continue to think it’s a good idea to have your hormone levels tested and be certain they are in balance—too much or too little of one or another may be problematic.

Take care all…..Sharon
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Re: Estriol

Postby Squeakycat » Wed Apr 30, 2014 3:48 pm

Shayk wrote::-D Here I am beating the drum.

In light of the news about estriol (a very long time coming) I want to bump the thread. Here’s a link to the news release from the NIH Preliminary Results Show Improvement in MS Symptoms (One has to wonder why they don’t identify estriol in the title???)
Combining the estrogen hormone estriol with Copaxone, a drug indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS), may improve symptoms in patients with the disorder, according to preliminary results from a clinical study of 158 patients with relapsing remitting multiple sclerosis (RRMS).

I continue on 8 mg. estriol/500 mg progesterone ( diet, exercise, supplements and Copaxone) and all things considered think I’m doing ok (guess EDSS 0-1).Take care all…..Sharon

Sharon,
Wanted to comment on this recent study of estradiol and Copaxone which is getting all the press attention.

The first comment is simply that I suspect that the benefits of estradiol are completely independent of Copaxone. The same research group recently published a study on testosterone and MS which has gotten almost no attention, probably because it works without a DMD.

The other comment is that I suspect, pure speculation on my part, that estradiol and testosterone work because they are secosteroids that interact with calcitriol, another secosteroid and the bio-active form of vitamin D.

I've provided links here.

Shayk wrote:And, since some are interested in targeting B cells, I wanted to post this article too: Oestrogen treatment of experimental autoimmune encephalomyelitis requires 17β-oestradiol-receptor-positive B cells that up-regulate PD-1 on CD4+ Foxp3+ regulatory T cells (full article available) I thought it may be of interest to folks considering neuroprotection with estrogens.


Note the interesting similarity in titles between the one you cite above and the study of using calcitriol to treat MS (EAE study) by Colleen Hayes:

One calcitriol dose transiently increases Helios+ FoxP3+ T cells and ameliorates autoimmune demyelinating disease.
Nashold FE1, Nelson CD, Brown LM, Hayes CE.
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Re: Estriol

Postby Shayk » Wed Apr 30, 2014 7:45 pm

Hi Squeakycat

Thanks for your comments...but one quick clarification, this was about "estriol", a different form of estrogen than estradiol (which is what you referenced).
The first comment is simply that I suspect that the benefits of estradiol are completely independent of Copaxone
I am in total agreement, except again that it is estriol, not estradiol.
The same research group recently published a study on testosterone and MS which has gotten almost no attention, probably because it works without a DMD.
I basically agree with this. I think any research that doesn't have a PR arm behind it (read pharma and DMD) doesn't get publicized at all. However, it's my understanding Teva didn't financially support this particular research. Way back when (over 10 years ago), it was my understanding Voskuhl was ethically uncomfortable doing a placebo only trial vs estriol and she chose Copaxone + placebo as the DMD of choice for the trial, although it was later opened up to other DMDs, no word yet on how it worked (or not) with other DMDs.
The other comment is that I suspect, pure speculation on my part, that estradiol and testosterone work because they are secosteroids that interact with calcitriol, another secosteroid and the bio-active form of vitamin D.
I don't have a clue about that.

I did want to add that the Medscape article on it contains a bit more while we wait for the publication. Adding Estriol Reduces MS Relapse Rate
The direct neuroprotective effects of estriol "occur since estrogens are capable of passing into the brain even in areas devoid of lesions, such as gray matter, to then bind to cells within the central nervous system to prevent them from being injured," said Dr. Voskuhl.
I think the article is worth a read if you're interested in estriol.

Take care...Sharon
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Re: Estriol

Postby Thekla » Sat Jun 21, 2014 2:28 pm

Hi!

I just came across this thread. I am just restarting treatment with estriol (8mg) and progesterone (creme). I had been copying an earlier study that used 8mg estriol--the progesterone just made sense! I had drifted away from it with CCSVI in 2010-11. I had previously felt the hormones helped with my bladder issues---a little. I was treated for ccsvi--twice which took care of my cogfog and fatigue. Recently, as I've been dealing with perimenopause, I've been increasingly convinced the hormones were a major puzzle piece for me. I started the estriol and progesterone again a month ago. I've been following Dr Mercola's suggestions for skipping a week a month to have some fluctuation in hormone levels, so I just restarted again last night. I slept really well! My bladder seems to be working much better, no extreme urgency. I just spent several hours in the sun and only got too hot and had to move to the shade briefly once.

I was diagnosed in my early 40s and considered SPMS because of one ON episode several years earlier but have been slipping since 2003. CCSVI helped some and TMJ/Jaw alignment is slowly (way too slowly) helping too. I am still mobile--barely. I use a rollator at home and a w/c elsewhere. If this indeed solves the bladder issues, I will be able to concentrate on my mobility.
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Re: Estriol

Postby Kronk » Tue Jun 24, 2014 8:44 am

I think there is some confusion between estradiol and estiol. The prior is a very potent estrogen while estriol is very weak by comparison.

I have read several articles that stated testosterone is beneficial for men with MS and estrogen is a detriment. Based on this I took an anti-aromatase (estrogen blocker) called Acacetin-99 (its not a medication and is a popular supplement for bodybuilders) along with a significant dose of Vitamin C and a natural test booster. As you can see in the link below the aromatase enzyme is required to create estrogen from testosterone. I have not had a relapse in 14months, but after 14 days of taking this regimen I relapsed. Coincidence? Probably, but I am definitely NOT going to try it again any time soon.

What interests me about the whole hormone thing is that the male body cannot make estrogen, it converts excess testosterone into estrogen for the amounts that we need. We know that dosing testosterone benefits men with MS but the exact mechanism of action is not known. Is it possible that supplementing testosterone may indirectly increase estrogen levels? The human body seeks balance, when you boost your testosterone you boost your estrogen and vise versa. That's why Bodybuilders who inject steroids but don't take an anti-aromatase grow breasts. Its all very interesting...

http://en.wikipedia.org/wiki/Estriol#me ... enesis.svg
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