new potential drugs for BFS?

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new potential drugs for BFS?

Postby jamber on April 27th, 2011, 3:40 am

Hi everebody,
I am a spanish guy, so sorry for my English....
I have read the interesting forum and want to write a post about new potential drugs about BFS.
There is a BFS approach based on antibodys and Potassium Channel. I have read it in the forum and in the website about PHN.
There are two especific drugs which act in the potassium channels. The names are flupirtine and retigabine. I want to ask if somebody have tried to take it. Some of them have very good researching neurologists and maybe you had told about it with them.
Thanks in advance!
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Re: new potential drugs for BFS?

Postby raindog on April 27th, 2011, 3:47 pm

jamber wrote:Hi everebody,
I am a spanish guy, so sorry for my English....
I have read the interesting forum and want to write a post about new potential drugs about BFS.
There is a BFS approach based on antibodys and Potassium Channel. I have read it in the forum and in the website about PHN.
There are two especific drugs which act in the potassium channels. The names are flupirtine and retigabine. I want to ask if somebody have tried to take it. Some of them have very good researching neurologists and maybe you had told about it with them.
Thanks in advance!


http://en.wikipedia.org/wiki/Flupirtine

http://www.inpharm.com/news/153638/gsk- ... ved-europe

Not tried it or heard it mentioned on my travels

Who knows? :)
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Re: new potential drugs for BFS?

Postby Barbie800 on April 27th, 2011, 4:08 pm

Never heard of it.
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Re: new potential drugs for BFS?

Postby msm on April 27th, 2011, 8:28 pm

Yes I have heard of Retigabine and it was one I was waiting to try called Ezogabine here to get approved since last August. The FDA here needed some more info and it was supposed to come out here early in 2011 and it still has not. Currently I am on a sodium channel blocker which follows the same concpept you are speaking of targeting messed up potassium and sodium channels called Lamictal. It seems to be working. I hope Ezogbine(Retigabine) gets released here because I do believe it can help this condition. Keep us posted if you try it and it works for you.

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Re: new potential drugs for BFS?

Postby chicagobfs on April 27th, 2011, 8:59 pm

Ok so who in Europe wants to try it first?:)

http://psy.psychiatryonline.org/cgi/con ... l/41/4/371 Interesting, maybe it will help with our pain associated witch twitching? :roll:
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Re: new potential drugs for BFS?

Postby dreadpirateroberts on April 28th, 2011, 7:33 am

It looks like retigabine may be interesting to try, though even if FDA approves it, health plans may be slow to add it to their Tier 1 lists to make it cheap. I tried a sodium channel blocker, diltiazem, which was supposed to be of some help for cramping. It seemed to work at first, but in the end it was just another failed med to add to my long list. It WOULD be interesting if our European colleagues would try it out and report back. Please?
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Re: new potential drugs for BFS?

Postby tiggida on April 29th, 2011, 5:23 pm

never heard of these, but glad some of you have. Keep us posted. Anything that will calm the twitching is worth the try. I have to write these drug names down...
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Re: new potential drugs for BFS?

Postby jamber on May 2nd, 2011, 9:00 am

This year we will have retigabine in Spain....
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Re: new potential drugs for BFS?

Postby jamber on May 3rd, 2011, 1:37 am

I am taking Zebinix (Eslicarbazepina). It's not working very well for me.
My neurologist believe that I have a neuropathy indepentely of the cramps....
The tests shows a sensitive neuropathy...
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Re: new potential drugs for BFS?

Postby jamber on May 3rd, 2011, 1:43 am

chicagobfs wrote:Ok so who in Europe wants to try it first?:)

http://psy.psychiatryonline.org/cgi/con ... l/41/4/371 Interesting, maybe it will help with our pain associated witch twitching? :roll:

Maybe, I hope it
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Re: new potential drugs for BFS?

Postby jamber on May 3rd, 2011, 2:24 am

This link is about Peripheral nerve hyperexcitability (PNH) and Retigabine and Flupirtine. It is not easy for reading:
http://onlinelibrary.wiley.com/doi/10.1 ... 50656/full
How much of your family have this disorders?:

The KCNQ gene family encodes five voltage-gated delayed rectifier K+ channels (KV7.1–5), which are mainly expressed in heart muscle (KV7.1), the central nervous system (KV7.2–5) and the inner ear (KV7.1, KV7.4)

I have read that some of you are "working" with Dr. Hart. He is in this text.
Peripheral nerve hyperexcitability (PNH) PNH (myokymia, neuromyotonia) is clinically characterized by a spontaneous and continuous muscle overactivity, which has been described as myokymia (undulating movements of distal skeletal muscle), fasciculations, cramps, or other symptoms, which are due to a hyperexcitability of peripheral motor neurons (Hart et al. 2002).
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Re: new potential drugs for BFS?

Postby raindog on May 3rd, 2011, 4:34 am

jamber wrote:This link is about Peripheral nerve hyperexcitability (PNH) and Retigabine and Flupirtine. It is not easy for reading:
http://onlinelibrary.wiley.com/doi/10.1 ... 50656/full
How much of your family have this disorders?:

The KCNQ gene family encodes five voltage-gated delayed rectifier K+ channels (KV7.1–5), which are mainly expressed in heart muscle (KV7.1), the central nervous system (KV7.2–5) and the inner ear (KV7.1, KV7.4)

I have read that some of you are "working" with Dr. Hart. He is in this text.
Peripheral nerve hyperexcitability (PNH) PNH (myokymia, neuromyotonia) is clinically characterized by a spontaneous and continuous muscle overactivity, which has been described as myokymia (undulating movements of distal skeletal muscle), fasciculations, cramps, or other symptoms, which are due to a hyperexcitability of peripheral motor neurons (Hart et al. 2002).


Dr Hart (liverpool walton centre) died a few years ago now. I was not a patient of his but ive conversed with someone who was, he was a good doctor in this specific field who understood the various diseases/conditions of nerve hyperexcitability well. and the effect it had on his patients. In this country Angela Vincent is the one who seems to be continuing were Dr Hart left off

http://www.neuroscience.ox.ac.uk/direct ... la-vincent
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