Estriol?

[nappy]

Has anyone joined the estriol study?
Because of my involvement with the NARCOMS surveys, I received information about the estriol study.

The information that I have so far says that because of the improvement ms patients see during pregnancy, the doctors are looking at the hormone estriol. Its level is increased during pregnancy.

In this study, patients who use Copaxone will add estriol to their daily medications.

I have taken Copaxone for four years. But during the last year I have had three relapses. I continued to work during the relapses, did the ivsm at home and have improved.

But at my last appointment, my neuro suggested that the Copaxone was not working as well as it had been and sent me home with info on Gilenya.

I as supposed to see the dr again in August for an MRI and try to make a decision on changing dmds.

I have to say that the side effects of G worry me. I teach primary aged children and can't afford to have debilitating fatigue brought on by medication. I know that it would eventually pass but worry about the meantime.

I already take Amantadine twice a day and I am still really dragging in the afternoon.

I am seriously considering entering the study. It might allow me to put off changing meds for a while.

Any thoughts?

[lemstar]

I am 55, and my recent exacerbation was the first in 29 years, and came on the heels of menopause, accompanied by lots of hot flashes. I am too old for the study, and don't use an CRAB now, but I did look into taking Estriol, and went so far as to start taking it. I took 8 mg a day (the amount used in the UCLA study), and had awful headaches. I was having a hard time getting a doc to oversee it, and my own regular doc was concerned that I might need progesterone to oppose the Estriol, and regular vaginal sonograms to keep an eye on the thickening of the uterus. I backed away from the Estriol, as HRT is not something I have chosen to do, and now adding Progesterone seemed an awful lot like high doses of HRT. And 8 mg is way more than one would take for HRT. So what do I think? I think its an idea with great potential, and if I was on Copaxone anyway, I think I would try it.

[nappy]

Considering it too

I feel like the study is a least something I could do about this disease.

Most of the time I feel like I am just reacting to it instead of doing something proactive about it.

And I want to be able to say I did something for my kids.

I am the fourth person in my family to have MS and I have three children.

If there is a better treatment or a cure around the corner, I want to do whatever I can to get there.

Now looking over the paperwork I see there are frequent gyn check ups, mammograms, mri... and am doubting that I can participate.

I have a baclofen pump and wonder if they will turn it off and on at each visit that requires an mri. And I have had a hysterectomy- but maybe that won't exclude me from the study.

But my biggest concern is that I am allergic to gadolinium. My MS neuro won't use it any more. I had a horrible reaction that needed emergency attention. Then tried again a year later with prophylactic medication and had a milder reaction. So no more gadolinium for me.

I have a call in to OSU Medical Center for MS Research and am waiting to see what they say.

Thank you for your reply.

[Irish7345]

I was in the Estriol Study

I am just now weaning off Estrio/Placebo and will be completely off by the end of this month. My reporting center was Ohio State University. For me it was a great experience. I won't find out if I was on the "live drug" for at least 2 to 3 years. As of June 2nd, they were still looking for 15 more patients to recruit. I started at age 50 1/2. (The trial is for 18 to 50) When I started I had to wash off all treatment, which mine was Copaxone for three months prior. They have since reduced that time to only 2 months and I was told that they may start reimbursing for travel if your reporting center is quite a distance. I traveled 8 hours one way and they were very good about scheduling appointments together to save trips. If you are interested, you just need to contact a reporting center nearest you and get all the up to date information. I honestly feel I was on the drug. I noticed Cognitive improvement within a few months and physical improvement and increased energy at around a year and half. Increased energy allowed me to excercise and lose 27 pounds during the study.

[nappy]

Thank you

Thank you for letting me hear from someone in the study. Our daughter attends OSU so I would be happy to combine appointments with visits. We are only about 2 hours away not 8!

Wow that would be a trip.

I need to see if I can take days off from work to go to appointments.

But most importantly they are weighing the fact that I am allergic to gadolinium and all of the MRIs that are needed.

Heaven knows I could use a little more energy and it sounds like you benefited.

Congratulations, I am glad it worked out well.

[sfwarbonnet]

I think the exclusion of men from Estriol studies to date is conspicuous. Granted men don’t have the pluming for pregnancy, but they do get MS. The beneficial effects of pregnancy on MS are often cited, so I wonder if the bodies of men could be “tricked” into thinking they’re pregnant?

[sfwarbonnet]

Not sure men would want to experience the other effects of taking female hormones.

As with any medication, one must weigh benefits against risks and possible undesirable side effects. The benefits of Estriol seem well established, but the risks and side effects in men are unknown; particularly at hormone levels typical of pregnancy. I.e. would Estriol cause ED and also have the side effect of causing breast growth and other "feminization"?