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Old 10-23-2016, 08:10 AM #1
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Question Gralise

Has any switched from Gabapentin to Gralise? My PCP has suggested I talk to my neurologist about it so I won't have to take so many pills throughout the day. Rather, take it in the AM and it lasts all day. I would be interested in others experience.
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Old 10-30-2016, 05:33 PM #2
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I'm taking Gralise and I think it was a good switch. I was on 3600mg of Gabapentin, 1200 three times a day, and I would notice more jitteriness and nerve activation when there was a change in my blood level, especially if I was late with a dose. Gralise keeps me much more even in those regards.

I was instructed to take it with dinner and that the 1800mg of Gralise I'm taking is equivalent to my previous 3600 of Gabapentin. Dinner times can vary wildly for me (like, between 6pm and midnight), but I have some straight Gabapentin I can take if it becomes too long since the last dose. I've also taken Gralise without food (such as the night before a colonoscopy), and that's also been fine. Gapapentin is better absorbed when there's fat in the stomach.

Horizant is another time-release Gabapentin with once-a-day dosing. Haven't tried it, but maybe others can weigh in.

And you've probably seen Lyrica mentioned. It requires only twice a day dosing, and I'm told it hits the exact same receptors in the body as Gabapentin does. It didn't work as well as Gabapentin did for me, and I think it was making me gain weight, so I switched back to Gabapentin. As they say, your mileage may vary.
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Old 10-31-2016, 11:09 AM #3
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Do it ! I take 1,200mg before bedtime & have been a very satisfied customer. No more peaks & valleys so to speak of. No more foggy periods during the day, for me it works great.

It took me fighting with my insurance company for almost a year to get it approved.

Good Luck
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Old 11-02-2016, 04:23 PM #4
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Quote:
Originally Posted by nilram View Post
I'm taking Gralise and I think it was a good switch. I was on 3600mg of Gabapentin, 1200 three times a day, and I would notice more jitteriness and nerve activation when there was a change in my blood level, especially if I was late with a dose. Gralise keeps me much more even in those regards.

I was instructed to take it with dinner and that the 1800mg of Gralise I'm taking is equivalent to my previous 3600 of Gabapentin. Dinner times can vary wildly for me (like, between 6pm and midnight), but I have some straight Gabapentin I can take if it becomes too long since the last dose. I've also taken Gralise without food (such as the night before a colonoscopy), and that's also been fine. Gapapentin is better absorbed when there's fat in the stomach.

Horizant is another time-release Gabapentin with once-a-day dosing. Haven't tried it, but maybe others can weigh in.

And you've probably seen Lyrica mentioned. It requires only twice a day dosing, and I'm told it hits the exact same receptors in the body as Gabapentin does. It didn't work as well as Gabapentin did for me, and I think it was making me gain weight, so I switched back to Gabapentin. As they say, your mileage may vary.
Thank you so much for this information. It is very helpful. I will also ask my neurologist about Horizant. I have not heard of it before.
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Old 11-02-2016, 04:28 PM #5
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Quote:
Originally Posted by MikeK View Post
Do it ! I take 1,200mg before bedtime & have been a very satisfied customer. No more peaks & valleys so to speak of. No more foggy periods during the day, for me it works great.

It took me fighting with my insurance company for almost a year to get it approved.

Good Luck
I am actually getting excited about possibly changing. The peaks and valleys are awful. Seems around 4pm every day my torso burns terribly. Would be great to have consistency (pain free would be nice). I see my neurologist on Monday so will be asking. No idea about my insurance but will try!

Thank you both for your replies.
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Old 11-13-2016, 05:21 PM #6
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Default Gralise

I was not able to get Gralise. My neurologist said they don't prescribe it because of the cost. I was able to get tested for SCN9a and should have results in a couple months. My neurologist said he would put me on Carbamendine if the test is positive. I don't see that as making any progress though. Just a different drug with worse side effects. I also just got the shingles. I did get the vaccine in 2013 and was put on Valtrex within 3 days. This tells me my immune system is weak. Not sure which way I will turn next but will keep trying.
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Old 11-13-2016, 06:35 PM #7
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Quote:
Originally Posted by Summerfun View Post
I was not able to get Gralise. My neurologist said they don't prescribe it because of the cost. I was able to get tested for SCN9a and should have results in a couple months. My neurologist said he would put me on Carbamendine if the test is positive. I don't see that as making any progress though. Just a different drug with worse side effects. I also just got the shingles. I did get the vaccine in 2013 and was put on Valtrex within 3 days. This tells me my immune system is weak. Not sure which way I will turn next but will keep trying.
Sorry, it's carbamazepine (not Carbamendine).
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Old 11-14-2016, 07:26 AM #8
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Sorry, it's carbamazepine (not Carbamendine).
I'm thinking that if you have scn9a, that a sodium channel drug would be the only option, no? Why does your doc want to do carbamazepine? Just curious, as I am still coming to terms with the possibility of daily meds. I'm waiting for this scn9a test result as well. It should be back any day now. Lets update each other.
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Old 11-15-2016, 09:12 PM #9
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I'm thinking that if you have scn9a, that a sodium channel drug would be the only option, no? Why does your doc want to do carbamazepine? Just curious, as I am still coming to terms with the possibility of daily meds. I'm waiting for this scn9a test result as well. It should be back any day now. Lets update each other.
You are right...it would be a sodium blocker. I may have misunderstood what he said. I will let you know my test result (which can take a couple months) and also check the name of the drug. Is it your understanding that IVIG does not work for hereditary neuropathy? That's my understanding. Sodium channels blockers seem to have a lot of side effects from what I have read. I am approaching 3 years of full body neuropathy so I fear the damage is already done. My bloodwork and tests have all been normal but not everyone tests positive for antibodies. Glad to share any information that might be helpful.
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Old 11-16-2016, 02:29 PM #10
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Quote:
Originally Posted by Summerfun View Post
You are right...it would be a sodium blocker. I may have misunderstood what he said. I will let you know my test result (which can take a couple months) and also check the name of the drug. Is it your understanding that IVIG does not work for hereditary neuropathy? That's my understanding. Sodium channels blockers seem to have a lot of side effects from what I have read. I am approaching 3 years of full body neuropathy so I fear the damage is already done. My bloodwork and tests have all been normal but not everyone tests positive for antibodies. Glad to share any information that might be helpful.
Do you have this kind of neuropathy in your family?
I do not, but we have some autoimmunity. They suspect something triggered me and my daughters at the same time, but don't know what. I'll report back what my genetic results as well.
How did yours come on? I had autonomic symptoms for a year and then it blew up in to full body painful neuropathy. The doctors have been useless besides one who helps me through with pain meds.
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