new neurotropin/CRPS study announced .......
 

here it is:


http://clinicaltrialsfeeds.org/clini...ow/NCT00006289

Thanks Voner,

This is not a new study, rather another phase of the original study. Foe anyone interested in trying this drug but who cannot participate in or is rejected by the clinical trial, you may apply to the FDA for compassionate use.

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the study is frustratingly slow. I wonder if anybody has a clue as to why the study has gone so slowly?

Has anyone ever run come into contact with anybody (in Japan or here or Asia) who has experience with neurotropin??

I know why! I went to NIH back in August because I passed through the phone screening and was going for the in person screening trying to get into the neurotropin study but was turned down because my RSD had spread too far.

The doctors there told me that it has been in trial here (in the US) for about 10 years, this study originally started out with them trying to get people who had been diagnosed within 2 weeks which happens to pretty much no one. So they widened the criteria a little to one month. Still not many eligible. They keep widening the criteria and said only one limb. Still not many people are eligible, because most people have RSD in multiple limbs so it is taking a while to find that perfect patient. They only need one more patient to close the study. After this phase of the study, it sounds like they are hoping to eventually study people who have RSD in multiple areas. In my case arm/hand/shoulder does not count as one limb : (

Long story, short, I wasn't eligible so they gave me the paperwork, and I applied for compassionate use. I was approved for 2 months. I took it, and it has helped decrease my hyper sensitivity (allodynia) a lot. My doctor requested an extension and the FDA approved me for another year. There are no side effects that I have experienced so far and it is very safe from what I hear. Its been effective in Japan for 40 years!

I'm new here so just to tell you a little bit about myself, I developed in my shoulder my RSD after a major shoulder surgery.

Hope this helps.

Linz

How much of a decrease in pain would you say? Over a year do you feel the same benefits now as you did when you began? :)

I didn't take it for a year yet. I have been on it since Nov. 2011 and since I was approved for another year, I am still taking it. To put things into perspective, my alloydynia, was a 6.5 pre-neurotropin and now its ranges from a 3.5-4. I still have bad days with weather and temperature changes. It has been a pretty consistent reduction so far. Knock on wood. I do definitely notice a difference when I don't take it.

I think its definitely worth a try if no other drugs have worked for you since it is very safe and has little to no side effects. However it doesn't help reduce the burning pain as much as I had hoped. It helps more for the alloydynia which is a really bugaboo for me especially with wearing clothing and undergarments. I have heard lots of success stories though. One person reported that they weren't able to wear pants or shoes before they tried the medicine and then after they took it they were able to.

hey voner I got your message on my visitor page and I would be happy to answer any questions I can to help about neurotropin but I am not sure how to send a personal message since I am new to this site. Could you please tell me how?

My daughter was in the study and got no markable results from the placebo to the drug. It was very disheartening.

musicgirl:

you have to make a certain number of posts to this forum before you can personal message and then you have to make another certain number of posts before you can include a web address in any of your posts.

I searched around to find the exact information -- but I couldn't. I'm sure somebody on here must know that. If you contact one of the administrators I'm sure they'll tell you.

to the best of my knowledge -- I think it was 5 posts will get you the ability to personal message someone. The personal message someone you just click on their name - and it just you the option to personal message.

I was confused by this issue also. hopefully somebody else will help out.

Sorry to hear that your daughter didn't get any results. I know it doesn't work for everyone.

I do know for those of you who might be interested in trying it that it has been helping others. NIH can't say for sure because the study is not complete and because it is double blind, they are not sure who is taking the actual drug. But they told me when I went there that during one of the phases of the study for the majority of the patients they have had so far (probably when they took the active drug), there was a notable reduction in pain/alloydynia. I know that if I forget to take it, or if I am waiting for the next batch to be shipped, I notice a difference. Hope this helps !