Neurotropin to treat allodynia
 

Neurotropin is one of the remaining things in my bag of tricks that I have not yet tried since I am having a positive response to tDCS.

After learning of the long track record of successful use of Neurotropin to treat CRPS in Japan I originally applied to be included in the Neurotropin clinical trial at NIH but was rejected. It was enormously frustrating to hack my way through the layers at NIH to get to the lead researcher to learn how to apply to the FDA for compassionate use. When I finally got the paperwork together I started treating with tDCS at home and put neurotropin on hold.

I told one of my husband's colleagues who has CRPS about the clinical trial and when she was rejected, I suggested she could apply to the FDA.

Long story short, she received approval for a two month trial and has just been approved for its use for a year.

I just wanted to get the word out in case anyone is interested. The cost, unfortunately, is about $300.00 to $400.00 a month.

ballerina,

Is the trial still going on? I know it was brought up awhile ago. Is this cost the cost of someone in the trial or can anyone get the drug now?

The trial is closed and the results have not yet been published. It will probably take years for Neurotropin to be approved for use in the US. Anyone may make application to the FDA for compassionate use. The first step is to find a physician who will be willing to sponsor you. This will probably be a challenge.

I would suggest to anyone seeking a sponsor to avoid pain management doctors, particularly those heavy into spine pain management. These docs are "interventionalists". They make their bread and butter on procedures and the more expensive procedure like SCS, the better. They are typically not interested in non-invasive forms of treatment that can many times be more effective and carry no or low risk. No pain management doctor is going to put his/her child through Harvard on non-invasive treatments like neurotropin.

I would suggest finding a good neurologist who has a track record treating CRPS patients. (By a track record I don't mean seeing the patient every six months but referring them to a pain management physician) An internist or GP might also be a good sources. The role of the sponsoring physician is to supervise you while you take the drug. This supervision is only blood work prior to beginning the drug and at intervals of 6 months, and filing the paperwork with the FDA. Not a big deal.

The sponsoring physician completes the FDA paper work, which is extensive. (In my case I asked the doctor if he would like me to complete it for his review which was fine with him. He, by the way is a pain management doc but of the rare variety who does not do SCS on CRPS patients and is even very cautious about doing SGB for CRPS.) Doing the paperwork myself assured that all of the details were accurate. I kept a copy of the blank forms just in case my doc wanted something changed. The paperwork is time consuming.

The application process takes about one month to six weeks. If approved the approval is provisional for a short period of time (2-3months) to see if there is a positive response to the drug. If the drug works future approvals are for one year with more paperwork being submitted for continued use. Some of the cost associated with the the drug is transferring US currency into yen which is charged each time there is a shipment.

After researching drugs to treat allodynia I have not come across one with a better track record than Neurotropin.

In Japan Neurotropin is the front line treatment for CRPS.

Hope this helps!

P.S. If the cost of the drug is a factor you might consider tDCS.