Hello...there is a FDA approved drug called flavocoxid that Dr. Guiseppe Vita in Italy just completed a pilot study on with 20 duchenne boys.  The results seem to be promising but I did not buy the full paper.  Has anyone heard about this or have any additional information they could provide?

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Thats the same article I found.  You have to buy the full article. It sounds like the drug helped stabilize the boys.  Is that what you take from it?

The abstract is promising but this was a small, initial study so would really like to see the full article before drawing any conclusions.  Will endaevour to get hold of it!

It appears flavocoxid would be used instead of steroids.  Looking further, the mouse studies they did before the human trials were comparing this drug and its benefits to to those of prednisone.

It would be great if we could at least reduce the use of steroids. The commercial name is Limbrel, used primarily for treatment of osteoarthritis and rheumatoid arthritis. I found a study indicating that "liver injury" is remotely possible due to allergic reaction to the plant(s) used as a basis of the drug. The liver injury was not permanent if treatment was stopped.

What does PPMD say about this? Sounds promising...

Lisa, I sent Sharon Hesterlee a message asking what she knew about this but have not heard back yet.  I will let you know as soon as I get a response.  I also emailed Dr. Giuseppe Vita in Italy, the doctor who performed the trial.  He is a committee member Of TREAT-MD and has done alot of other research and studies invovling DMD.

Thanks Chris.

Really want to hear PPMD's comment.

I hope for the best but caution that Flavocoxid has been associated with liver toxicity in other clinical trials.

Search for Limbrel for more info that's the brand name, approved for osteoarthritis.

Flavocoxid is a blend of flavonoids, which is natural material. Lots of claims being made about flavonoids in general, like epicatechin as an example.

Who to believe? Which rabbits are worth chasing? The ever present question.

 

Lisa, Dr. Sonia Messina, who is working with Dr. Vuta on the flavocoxid trial wrote back to me to say she is still putting together the preliminary results of the trial but that it would be done by mid February and that data would be presented at the Italian Parent Project Annual Conference. She stated that one patient is still continueing to take the medication and that I should contact her again in March for an update.

 

 

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