Anyone in Clinical Trial for Estriol?

[bhrungo]

Thinking of participating in this clinical trial at the Mayo Clinic. Anyone on here in this trial? Have anything you care to share about how it's going? Side effects?

Thanks!

[JadeVictoria]

I've been thinking of doing this trial also. Hope somebody chimes in.

[Jenny3838]

After I was diagnosed last July and started on rebif in Sept., one of the other neurologists that I saw was involved with a trial where they used copaxone and estriol. Since I had just started the rebif, he asked me if I wanted to switch to this trial. I asked my gyne and two other gyns, that I know personally. They told me that they were concerned down the line that giving that hormone to someone long term may eventually increase the risk of cancer. Again, this was their opinion. They are trying to mimic the pregnancy level of this hormone. I also worry about their concerns.

Thinking of participating in this clinical trial at the Mayo Clinic. Anyone on here in this trial? Have anything you care to share about how it's going? Side effects?

Thanks!

[lori]

I'm bumping this up to see if anyone responds.

[lindaincolorado]

another bump ...

[onlyairfare]

I guess I have my own trial, as I have continued menopause/post-menopause hormone replacement therapy. I had to quit the Copxone part of "the trial" because I couldn't afford the co-pay.

It is possible that down the line there is increased cancer risk, but I definitely have menopause symptoms right now that are relived by HRT. I get my mammograms and pap smears regularly, so I hope that is in my favor.

The truth is nobody knows right now, but the simulated pregnancy makes sense to me, as I had only one short flare during my pregnancies.

[Sunshyne]

I guess I have my own trial, as I have continued menopause/post-menopause hormone replacement therapy. I had to quit the Copxone part of "the trial" because I couldn't afford the co-pay.

It is possible that down the line there is increased cancer risk, but I definitely have menopause symptoms right now that are relived by HRT. I get my mammograms and pap smears regularly, so I hope that is in my favor.

The truth is nobody knows right now, but the simulated pregnancy makes sense to me, as I had only one short flare during my pregnancies.

So then are you on Estriol? And if so where did you get it? I tried to get my doctor to give it to me for menopause symptoms (thinking I could kill two birds with one stone). But what she actually prescribed to me were the Estradiol patches...not what I wanted so I did not use them.

Did you need to go to a compounding pharmacy? and if so, are you using the pill or a cream?

I know I've asked you to answer a lot - Sorry! I am just really interested in this. Thanks!!!

[onlyairfare]

It is not easy to buy estriol in the US except in the cream form. But you can buy the pills or capsules in other countries such as India or Pakistan, Israel, Germany or Canada (though I think those are imported from Asia), or have friends bring them back to the US for you. My work occasionally takes me overseas which is when I stock up.

I think the compounding pharmacies and purveyors of "bio-identical hormones" seem expensive and underhanded. I don't trust Mexican pharmacies, and there are plenty of people who wouldn't trust Indian or Pakistani pharmaceuticals either.

I suppose you could just take the cream orally or even apply it topically, though I haven't tried either. When I am out of estriol (which I take with progesterone as I still have my uterus and don't want to increase uterine cancer risk), I just go back to PremPro which relieves menopause symptoms though it is not the same. To be honest, I do not notice a big difference, but that may be because I feel terrible when I have night sweats and have hot flashes, so any relief is a big relief.

I don't advise other people to take this path, as I think the "FDA equivalent" in non-European and non-British Commonwealth countries is probably not as good as our FDA. But I have had a lot of health problems besides MS so my goal is being comfortable, not maximum safety.

Just my two cents - and I admit it's unorthodox.

[Sunshyne]

Just my two cents - and I admit it's unorthodox.

Unorthodox or not - I applaud you. As you know, estriol has been used in Europe for decades with a good safety profile. I think it's crazy that we do not have it readily available to us. Of course the FDA let women use estrogens made from horse urine...ugh

[lori]

After seeing the very large clinical trial with estriol and copaxone, I asked my neuro for a rx. From the info I found estriol is a very weak estrogen and very unlikely to cause any long-term problems. If you look at the prestigious medical centers running the trial, it would seem highly unlikely that they would consider something deemed dangerous. I got my rx from Skips Pharmacy for 8mg capsule/day at $30 a month.

The trial is for RRMS (naturally). I'm PPMS and don't take any DMD. I'm hoping for neuroprotection in the long term. In the first month, it did help my menopausal symptoms.

[icecreamlvr987]

I am currently in the trial for the Estriol with Copaxone. I started the trial in July 2010, but do not know if I am on the estriol or the placebo. I have not seen any side effects either positive or negative. The one thing I do have to say about the trial is that I feel very well looked after. I have to go into the hospital every three months for some sort of test, and at this time I meet with at least one person involved in the study so I can voice any of my concerns.

I am excited to see the outcomes of the study, and I hope it can help fellow MSer's.

[Mattie]

Estriol

Hi, I am a 52yr old white female. I have been on Estriol 8mg 1tab daily for 2 years now. Before I was put on Estriol I was going downhill at a very fast rate. I was diagnosed SPMS 2001. Estriol has helped my MS symptoms in every way. I have alot more energy, less allover stiffness, I can walk better, etc,etc. About 3 weeks ago I accidently stopped taking the Estriol, as I do a monthly medication box and forgot to put the med in the box. Well, for the last 2 weeks I have started having so many problems again, so fatigued, continuouslly sleeping, etc.etc. So, of course I knew something was very wrong. I took my med box out and realized I had not taken the Estriol in almost a month. So I just wanted everyone on here to know that the Estriol works.

Thank, Mattie

[JenAM]

I'm really glad that your all participating in this trial. I would have liked to, but my Mom died from a very aggressive form of breast cancer a year ago, so I don't dare to. Thanks to all who are in this trial!

Jen

[Justsayyes]

Hi, I am a 52yr old white female. I have been on Estriol 8mg 1tab daily for 2 years now. Before I was put on Estriol I was going downhill at a very fast rate. I was diagnosed SPMS 2001. Estriol has helped my MS symptoms in every way. I have alot more energy, less allover stiffness, I can walk better, etc,etc. About 3 weeks ago I accidently stopped taking the Estriol, as I do a monthly medication box and forgot to put the med in the box. Well, for the last 2 weeks I have started having so many problems again, so fatigued, continuouslly sleeping, etc.etc. So, of course I knew something was very wrong. I took my med box out and realized I had not taken the Estriol in almost a month. So I just wanted everyone on here to know that the Estriol works.

Thank, Mattie

Thank you for posting and telling us about your experience with estriol. Curious if this was prescribed by your neuro for MS symptoms?