Research and the slow process - i am angry!

[Virginia]

I was reading the latest Momentum magazine, and found something under "Research Now" that iritates the heck out of me.

Over twelve years ago I was in a class on MS. It was being taught by an MS nurse who herself has MS. She talked about the possibility of harmones helping women. Since then I have read about this from time to time. It is the harmone "estriol". It used to be used here, but now is only in Europe and other countries. Back then they were doing research on it - well guess what - they are STILL researching it. This nurse had gone to California where she attended a symposium on estriol. By the way, for anyone concerned when I had breast cancer I read a book about breast cancer treatments. Estriol is given to women in Europe who have breast cancer.

Now they have done a very small test on men using the male harmone "testosterone". Guess what - again it helped the men that it was administered to. It was very small, but this was in 2008.

Now can someone please give me just one sound and reasonable answer as to why more has not quickly been done in this area? They have known about it in women for 15 years and men for about 5. How about the very low cost of the harmones - that is the only thing that I can figure out. If it doesn't cost an arm and a leg it couldn't be any good, right?

Anyone else a little irritated?

[stillstANNding]

Hi Virgina.

I don't know much about this except that women do (usually) do better when they are pregnant and tend to have a relapse afterwards. Seems that there should be no reason that a hormone could not be given off label if you wanted it.

Best to you,
ANN

[Virginia]

The harmone "estriol" is the one that women have more of when they are pregnant, so it makes good sense. However, we can no longer get it in the US. I think it is too cheap. So much for taking it off label.

[SalpalSally]

I know Virginia. My Neuro's nurse told me about hormones helping
people with MS way back in 1995. So why are they still researching it?
It either does or it doesn't help and that should certainly be known by
now.

I am mad with you..

[agate]

They have to be very, very cautious because every drug has its risks, and some of the risks involve serious problems. There's been some question about whether estriol might cause some types of cancer, for instance.

That's one possible reason for the long wait, but it's about the only one I can think of.

[Virginia]

Agate, my feeling is that by now they should know one way or the other. After all Tysabri can cause PML - so which is worse? However, with big money they fast tracked Tysabri right through. If estriol and testosterone (for men) will help we should be able to decide that as much as the people get to decide about taking Tysabri.

When I had cancer and my Doctor told me about a book to read and it told how estriol was given in Europe to women who have breast cancer, I just could not believe that more had not been done to check this out for MS.

Thanks for being the voice of reason around here. I know some of us just get too angry.

[agate]

Agate, my feeling is that by now they should know one way or the other. After all Tysabri can cause PML - so which is worse? However, with big money they fast tracked Tysabri right through. If estriol and testosterone (for men) will help we should be able to decide that as much as the people get to decide about taking Tysabri.

When I had cancer and my Doctor told me about a book to read and it told how estriol was given in Europe to women who have breast cancer, I just could not believe that more had not been done to check this out for MS.

Thanks for being the voice of reason around here. I know some of us just get too angry.

You don't seem too angry to me. If you can't express yourself on a support board, where can you express yourself?

I think the point is a good one. They do seem inclined to push ahead pretty fast with the blockbuster drugs that come along while leaving other possibilities sitting around for all too long.

[renee]

Makes me wonder who did the research and where the money came from.

I have a happy non MS pharma story.
A friend was recently diagnosed with macular degeneration. In his late 50's.
One of his parents had it and the diagnosis was frightening.

After he was delivered to a cadre of specialists he began receiving injections every several weeks
of a drug that has been traditionally used for cancer.
Degeneration has stopped and his eyesight should continue to be unaffected by the eye disease.

Makes me glad that someone benefits from dual purpose medical intervention.

I'm glad I have fight in me.

[SalpalSally]

Wow, that is just super story Renee. Thanks for making my day.
Bless those Docs for having the guts.

[jendie]

So female hormones could cause cancer. That isn't a good enough reason. Living can cause cancer.... taking some chemo drugs have potential cancer causing side effects.

I was dx almost 15 years ago and they were saying that a cure for MS was about 10 years away.... I'm still waiting and getting progressively worse. I have minimal love for the medical profession.

[Virginia]

Renee, that really is a great story. I just wonder why more Doctors do not use this treatment for macular degeneration. It is a very bad thing and it would be wonderful if they have found a way to help stop it in it's tracks.

Jendie, I was diagnosed about the time you were (very late in life for me). I heard exactly the same thing you heard. I was told that it was a good time to be diagnosed, if one had to be, because a cure was only about 10 years away. Like you, I am waiting and waiting.

[Cherie]

It frustrates me that I cannot seem to find up to date, current trials on estriadol. This has been looked at now for probably 6 or 8 years as a possible relief for MS symptoms in women and yet I cannot seem to find up to date information on trial information.

Seems like everyone agrees that this hormone helps women. Seems like there is plenty of information stating that it helps. Yet the FDA has not logged in. It has not been approved as a medication that may help women with MS. Docs can use this as an off label treatment for MS. If you are a woman with MS, ask your doc how this might benefit you and if s/he does not know...pursue the information and ask them to look it up and get answers or go to someone who might be willing to try it on your behalf.