unfortunately no,. she could not really tell the difference between a and b.

im sorry, im new to alot of this, what is Neurotropin?

Neurotropin is extracted from the skin if rabbits and has been used extensively in Japan to treat neuropathic pain, including CRPS with excellent results. I spoke with the lead researcher who indicated that all positive responders to the drug would be able to keep taking it after their participation is the study was over.

I applied to the study myself but was initially denied because I has recently undergone tDCS. I was told that when I had a stable pain level for several months I could apply again. I opted not to however because admission to the study required an nerve a conduction test that I deemed too risky for me at this point.

Hope this helps! Teri

I don't know if 'keep taking it' is exactly what will happen. It is not FDA approved, therefore your insurance probably will not pay. What you have to do is jump through hoops and YOUR doctor (not NIH) will have to apply for compassionate use and get approval for you to take it. How insurance deals with that is unknown to me. I do know of several people who have had excellent results which is very exciting.

The drug rep for the Nippon Zoki Pharmaceuticals indicated that they would have some part in ensuring that the drug continued to be available for trial members. (And I'm hoping that I am stating that correctly, some things may have been lost in translation.)

For trial members who have reacted favorably to the drug, there is also the option for a third phase to continue taking the drug a bit longer.

Has the neutropin effected your pain level?

We haven't heard from you in a while. How are thingd going with the neurotropin?

Has it given you any relief?????

Thanks!

Hey there guys... the long awaited response! I tried to copy & paste over here but evidently it didn't like my formatting so I'll just link you:

My Experience in a Clinical Trial at the NIH

I'll be posting more general info tomorrow about clinical trials at the NIH. If you have any additional questions, please feel free to post them either on my blog or here & I will do my best to answer them.

My daughter completed that study in the summer of 2010. We had high hopes too and in our view, she seemed to be doing better. No trips to the ER, a little more functional. But when push came to shove, she could not see a difference between A or B and opted out.

I'm sorry to hear that. I wonder what the final statistics will be?

This disease is really a "chew you up and spit you out" disease as far as hope goes, isn't it? You never know if something is truly helping you or if it's the ebb and flow of the disease itself.