Saw my neuro this morning - he and I looked at the current research on effects on MS of Estriol (an estrogen women produce in pregnancy). He said he was happy for me to go on Estriol but did not have much knowledge of it. He will write to my GP about it to see if my GP feels qualified to prescribe it or whether he wants to refer me on to a doctor who specialises in hormones. Will let you know what happens.
Good news, keep us informed would be really interested to hear how you get on. Was everything else OK. X
He was really pleased with the effects of the fampyra, but still suggesting I try botox injections to help with my ongoing bladder control problems. I should post on a new thread to ask about experiences of this - still keener to find a more effective drug than Vesicare which helps but not enough.
I saw my GP on Friday and had a discussion (argument) about whether he should prescribe estriol for me. His view was that doctors shouldn’t prescribe drugs until they have gone through stage 3 trials and doing anything else is being a witch doctor. My view was that estriol is already known to be safe because it’s prescribed to menopausal women and I can’t wait for stage 3 trials, I need something to stop my deterioration right away. We agreed to disagree in the end, but he is going to refer me to a gynaecologist who may prescribe estriol. This is probably for the best really, because (hopefully) the gynaecologist will be able to say if there are dangers in prescribing estriol to a woman who has not reached the menopause. The other possibility is he won’t prescribe because he doesn’t know enough about MS…
Bit of a non-story on this in the end I’m afraid, but I thought I would post anyway since I said I would. I saw a gynaecologist on Thursday and talked to him about estriol. His view was that all three different estrogens have a protective effect on myelin. He didn’t think it is that likely that there is anything particularly special about estriol. His view was that there is a benefit to women with MS having HRT after the menopause but it is quite likely that increasing estrogen levels for pre-menopausal women won’t have any benefits. This was all just his opinion and he said I should keep an eye out for the results of the US phase 2 clinical trial, which are meant to be reported in January 2014. I did spend nearly an hour with this doctor, but the first half of this was spent on him working out whether Modafinil stops the Mirena coil from working. There’s a warning that it does this in the leaflet that comes with the drug. The doctor decided the drug company were wrong to suggest this because Modafinil reduces levels of hormones circulating in the blood. The hormones in the Mirena coil have a local effect. However, I am wondering whether Modafinil might reduce the protective effect of estrogen on Myelin. This has only just occurred to me.