Views: 1286

Reply to This

Replies to This Discussion

Interesting. And an already approved drug...

Very interesting.  Since it's already on the market, what steps are necessary to start using this for our boys?  Clinical trials and a few years of waiting?  As we all know, time isn't on our side...


Keith

My understanding of drugs already on the market is that they would just require a pilot study...basically a one and done trial to add duchenne to the lists of illnesses this could be prescribed for. 

I have been reading about side effects if anyone else has done the same, please share your impressions.

Yes, there are side effects. Steroids have side effects too. Duchenne itself seems to have the most nasty ones.

My grandmother was a "guinea pig" for tamoxifen breast cancer research in the 70's.

The side effects seem to appear in very small numbers considering the 10 year trial they did on women taking this for breast cancer.  They followed over 6,000 women for a period of 5 and 10 years.  Also the dosage that they think would be used to achieve benefit in duchenne would be much lower than that being used for adult women, hopefully reducing the risk of the known side effects.

Tamoxifen Side Effects for Men:

http://www.livestrong.com/article/250647-tamoxifen-side-effects-for...

There maybe a problem giving Tamoxifen to kids before puberty. I found one small article on 15 year olds taking the drug to increase there hight. Can't find any thing on kids younger.

http://children.webmd.com/news/20051213/tamoxifen-may-boost-short-b...

 

 

If it can be helpfully please do something quickly, because time is not on our side

I read one article about how it may actually interfere with growth by fusing the growth plates prematurely. But then my son is also extemely short due to steroid growth failure. Then I read one about it helping IGF-1 levels. Who knows at this point, this was an early study in mice only, not human children.

Tamoxifen Side Effects for Men:

http://www.livestrong.com/article/250647-tamoxifen-side-effects-for...

There maybe a problem giving Tamoxifen to kids before puberty. I found one small article on 15 year olds taking the drug to increase there hight. Can't find any thing on kids younger.

http://children.webmd.com/news/20051213/tamoxifen-may-boost-short-b...

 

 

Methotrexate (MTX) was orginally just a chemo drug that was later found to be helpful in autoimmune diseases, but at a lower dose.

 

Once again I find myself trying to decide about givin it or not, dosage and praying for no side effects, i am not closed to anything that can help my son, and from reading this you guys posted I can imagine someone treating any disease and having as side effect the progressive muscular breaking and deterioration to the point they dont grow any more and they are useless....for sure I wont be giving my kid something that has this side effect.!!

Dear Juan,

I am very sorry for the predicament you find yourself in. I just posted this as a piece of information only, but remember it is just a mouse study! I just think that any therapy that shows some real, demonstrated promise should be further explored for all our boy's sakes. None of us want to expose our children to more risks than benefits, but that is a part of research. Each and every medication can have bad side-effects (including streroids), and we all react to drugs differently. It's an idividual and family decision, a choice that we all have to make, hopefully sooner than later. I personally rather have the opportunity to make a decision than to have no options at all. The Tamoxifen study is just too early to say one way or the other if it could be a potential therapy. In an ideal world, there would be no Duchenne, no medication side-effects, and no animal testing, but we are not there yet.

Let's try to stay focused on the positive. Lord knows it's not always easy. Take care of you and yours, Juan.

A.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service