Update Treatments

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Update Treatments

Postby jamber on August 5th, 2011, 3:31 am

Hello everybody from Spain,

I want to write in this post about the most sucessful treatments in this forum (I have read) so please let me know about your situation with these treatments. It will be ok to write some lines and get it to our neurologists who don´t know very much about PHN treatments. However, they are not experts in the patology but they want to treat us.

Treatment Line Number 1: Lose Dose Naltrexone (LDN).
Treatment Line Number 2: Lamotrigine
Treatment Line Number 3: Flupirtine/Retigabine (potassium channel openers)

Best regards
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Re: Update Treatments

Postby msm on August 5th, 2011, 12:54 pm

I have been on Lamictal (lamatogrine) since the end of February, and am up to a 275mg dose and it has changed my life. I can work out hard, it eliminated the body wide twitching including calves and I rarely have a hot spot. I would highly recommend this medication. It carries a warning about developing a rash steven johnson syndrome but this is rare and can happen with a lot of everyday medications.Even My Dr did not think it was a big deal. I have had no side effects and feel like I did pre bfs.

Mary

I wish Retigabine, Potiga in the US would come out, I would love to try it as it opens potassium channels and would probably work for this condition as well.
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Re: Update Treatments

Postby trajon_34 on August 5th, 2011, 2:29 pm

msm wrote:I have been on Lamictal (lamatogrine) since the end of February, and am up to a 275mg dose and it has changed my life. I can work out hard, it eliminated the body wide twitching including calves and I rarely have a hot spot. I would highly recommend this medication. It carries a warning about developing a rash steven johnson syndrome but this is rare and can happen with a lot of everyday medications.Even My Dr did not think it was a big deal. I have had no side effects and feel like I did pre bfs.

Mary

I wish Retigabine, Potiga in the US would come out, I would love to try it as it opens potassium channels and would probably work for this condition as well.


I just posted this in another thread but since this one is a bit more recent I thought I would post it here too. I'm not sure how the approval process works but according the not always reliable wikipedia, hasn't this been approved as of June 2011.

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

"Retigabine (INN) or ezogabine (USAN), codenamed D-23129, is an anticonvulsant used as a treatment for partial epilepsies. The drug was developed by Valeant Pharmaceuticals and GlaxoSmithKline. It was approved by the European Medicines Agency under the trade name Trobalt on March 28, 2011, and by the United States Food and Drug Administration (FDA), under the trade name Potiga, on June 10, 2011."

Retigabine works primarily as a potassium channel opener—that is, by activating a certain family of voltage-gated potassium channels in the brain.[2][3][4] This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine and neuropathic pain.
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Re: Update Treatments

Postby RandyR on August 5th, 2011, 11:38 pm

msm wrote:I have been on Lamictal (lamatogrine) since the end of February, and am up to a 275mg dose and it has changed my life. I can work out hard, it eliminated the body wide twitching including calves and I rarely have a hot spot. I would highly recommend this medication. It carries a warning about developing a rash steven johnson syndrome but this is rare and can happen with a lot of everyday medications.Even My Dr did not think it was a big deal. I have had no side effects and feel like I did pre bfs.

Mary

I wish Retigabine, Potiga in the US would come out, I would love to try it as it opens potassium channels and would probably work for this condition as well.


I'm hoping my doc will try me on the lamictal or the other one, I cant remember the name. I'm scared to death to try it because of the sjs but I would just about try anything at this point....

How long does it take to work your way up Mary? I also heard if you miss a dose you have to wing yourself up again, is this true? I'm bad for missing doses of my medicine, I'm not used to taking it and now I'm on 4 different ones :(
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Re: Update Treatments

Postby msm on August 6th, 2011, 2:42 am

trajon_34, Hear is an article which does show the drug has indeed been approved but will not be on the market until probably the end of the year:


FDA OKs New Epilepsy Drug
Potiga Approved as an Add-On Drug to Treat Partial Seizures Caused by Epilepsy
By Jennifer Warner
WebMD Health News
Reviewed by Louise Chang, MD
Hand stamping approved on file folder

June 13, 2011 -- Adults with epilepsy will soon have a new drug to help control seizures as part of their overall epilepsy treatment.

The FDA has approved the drug Potiga (ezogabine) as an add-on drug to treat partial seizures caused by epilepsy. Partial seizures affect only a limited area of the brain but can spread to other parts of the brain and cause a variety of symptoms, including spasms, unusual behavior, convulsions, and loss of consciousness.

It's the first drug in a new class of seizure medications design for epilepsy treatment known as neuronal potassium channel blockers. Although the exact mechanism of these drugs is not clear, they are believed to control seizures by stabilizing potassium channels in the brain affected by epilepsy.

“About one-third of people with epilepsy do not achieve satisfactory seizure control from treatments they are currently using,” says Russell Katz, MD, director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research, in a news release. “It is important to have a variety of treatment options available for patients with epilepsy.”
Potiga Approved to Treat Epilepsy

The FDA's approval was based on the results of three clinical trials involving more than 1,000 adults. These studies showed Potiga reduced seizure frequency by about 30%-40% in those who responded to the drug.

The most common side effects caused by Potiga in clinical trials included dizziness, fatigue, confusion, tremor, problems with coordination, double vision, problems paying attention, memory problems, and lack of strength.

In addition, Potiga can cause problems emptying the bladder, a problem known as urinary retention that is common among seizure medications.

Overall, 25% of people receiving Potiga in clinical trials discontinued treatment due to negative side effects compared with 11% of those who received the placebo.

As with other seizure medications and epilepsy treatments, the FDA warns that Potiga may cause psychological symptoms, such as confusion, hallucinations, and suicidal thoughts in a small number of people. People who experience these symptoms should contact their health care provider immediately.

Potiga is expected to become available in U.S. pharmacies as a controlled substance by the end of 2011. The drug was developed by Valeant Pharmaceuticals North America of Durham, N.C., and will be distributed by GlaxoSmithKline of Research Triangle Park, N.C.

Potiga is known as Trobalt (retigabine) outside the U.S. and was approved for use by the European Union in March.



Randy,

Dr. Tahmoush started me on 25 mg for one week than fifty mg the next than 75 the next than 100, 125, 150, 175, until I hit 200. I waited to see what results I got from that which were very good at that point and he than allowed me to go up as needed 25mg until I reached 300 if necessary. I am stopped at 275mg for now and I feel 98% back to normal. Steven Johnson syndrome is very rare so I was not concerned about it. I have had no side effects from this drug except that I am living as normal a life as I had been before this all started two years ago. I am able to work out normally, have very little twitching, my cramping is almost gone if not completely and I am enjoying my family and friends again. I never doubted the diagnosis of cramp fasiculation syndrome once it was made but the annoying twitching and cramping finally made me seek out a drug that was more helpful, thanks to a friend I met on this board who went to the same doctor three years ago. She was right, he was an awesome doctor and the drug had the same good results for me as it did for her. I am not pushing this drug but just answering the question first posted on the thread and can safely say, I am glad I tried it. Also, if you miss one dose you do not have to start all over again, but I take it about twelve hours apart, and if I am late an hour or so I take it at that time and then at the regular time for the later dosage. Hope this helps.

Mary
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Re: Update Treatments

Postby trajon_34 on August 6th, 2011, 2:56 am

msm wrote:trajon_34, Hear is an article which does show the drug has indeed been approved but will not be on the market until probably the end of the year:


FDA OKs New Epilepsy Drug
Potiga Approved as an Add-On Drug to Treat Partial Seizures Caused by Epilepsy
By Jennifer Warner
WebMD Health News
Reviewed by Louise Chang, MD
Hand stamping approved on file folder

June 13, 2011 -- Adults with epilepsy will soon have a new drug to help control seizures as part of their overall epilepsy treatment.

The FDA has approved the drug Potiga (ezogabine) as an add-on drug to treat partial seizures caused by epilepsy. Partial seizures affect only a limited area of the brain but can spread to other parts of the brain and cause a variety of symptoms, including spasms, unusual behavior, convulsions, and loss of consciousness.

It's the first drug in a new class of seizure medications design for epilepsy treatment known as neuronal potassium channel blockers. Although the exact mechanism of these drugs is not clear, they are believed to control seizures by stabilizing potassium channels in the brain affected by epilepsy.

“About one-third of people with epilepsy do not achieve satisfactory seizure control from treatments they are currently using,” says Russell Katz, MD, director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research, in a news release. “It is important to have a variety of treatment options available for patients with epilepsy.”
Potiga Approved to Treat Epilepsy

The FDA's approval was based on the results of three clinical trials involving more than 1,000 adults. These studies showed Potiga reduced seizure frequency by about 30%-40% in those who responded to the drug.

The most common side effects caused by Potiga in clinical trials included dizziness, fatigue, confusion, tremor, problems with coordination, double vision, problems paying attention, memory problems, and lack of strength.

In addition, Potiga can cause problems emptying the bladder, a problem known as urinary retention that is common among seizure medications.

Overall, 25% of people receiving Potiga in clinical trials discontinued treatment due to negative side effects compared with 11% of those who received the placebo.

As with other seizure medications and epilepsy treatments, the FDA warns that Potiga may cause psychological symptoms, such as confusion, hallucinations, and suicidal thoughts in a small number of people. People who experience these symptoms should contact their health care provider immediately.

Potiga is expected to become available in U.S. pharmacies as a controlled substance by the end of 2011. The drug was developed by Valeant Pharmaceuticals North America of Durham, N.C., and will be distributed by GlaxoSmithKline of Research Triangle Park, N.C.

Potiga is known as Trobalt (retigabine) outside the U.S. and was approved for use by the European Union in March.



Thanks for the info. I wasn't too sure as to how the whole process works.
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Re: Update Treatments

Postby trajon_34 on August 6th, 2011, 2:59 am

Any idea as to if this is on the market in Europe yet? And if anyone on this forum is on it...I'm assuming no, since no one has posted about it.
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Re: Update Treatments

Postby msm on August 6th, 2011, 3:00 am

trajon_34, You are welcome!
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Re: Update Treatments

Postby RandyR on August 6th, 2011, 4:02 pm

Mary,

Glad to hear it is helping you so much, I do not think anybody here would think you was trying to push it on us, I can only speak for me but I am very happy to hear that something is working for this syndrome. I will talk to my Doc about it and will let you know if I get to try it or not...

Thanks and God Bless

Randy :D
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