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12/05/2013 05:59 AM

GRALISE (GABAPENTIN) ? or Lyrica?

Mel1969
Mel1969  
Posts: 43
Member

Hi. I just started Gralise 300 mg 1x/day. This is Gabapentin in a control -release form. Has anyone else tried this? I was diagnosed with RSD almost 4 months ago but this is the 1st & only med that has been prescribed for the burning pain. I haven't taken Lyrica or any others. I've read many negative reviews about Lyrica.

I'm wondering if anyone else has taken Gralise (it's a newer drug) and how has it worked? What is your dosage? If it has helped, how long did it take to notice improvement? Does it make the pain completely go away? Do you have any side effects?

Has anyone taken Lyrica and Gabapentin and can tell me which they preferred and why? Is there something else that people have tried for the burning pain?

Thanks in advance for any input. I've only had Gralise one day. I took it in evening. I'm feeling a little groggy this morning but not sure if it can be contributed to Gralise. No change in burning pain, but I'm assuming I have to be on the med for at least a few days before I notice improvement.

THANKS AGAIN!!

M.

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12/05/2013 02:55 PM
SoCalK
SoCalK  
Posts: 13
New Member

So sorry to hear your diagnoses. Fortunately you found this site which has proved to be a serious god-send for me! I hope you get as much from it as I have.

I have been taking Neurontin (Gabapentin) pretty much since I was diagnosed with CRPS back in 2003, taking 600mg 3 x day. I went off of it for awhile because it started to make my legs really sore like they were severely bruised. My doctor put me on Lyrica --until I got so depressed from gaining so much weight. After about a year he put me back on Neurontin. Right now I take 300mg 2 x day. I was able to reduce my dosage after I got my stimulator implant. Since then I have had zero drug side effects. It does take a bit for it to get into your system, but it should take care of that burning tingling needle like pain. I haven't tried Gralise but I'd be interested in knowing how well it works for you. Hope this helps!

Gentle Hugs,

K


12/06/2013 07:09 AM
jpcrps
jpcrps  
Posts: 1685
Senior Member
I'm an Advocate

Have not had much success with the Gabapentins, and have not tried the Gralise. Hope you will find someone who has some time on it to share their experience. Each of us reacts differently to meds, but there are some very common threads, such as the weight gain with Lyrica. Hope you get a few more responses here!

Love,

Jenny


12/08/2013 04:33 PM
Mel1969
Mel1969  
Posts: 43
Member

I've taken Gralise 3 days now. It is making me very sleepy!!! This is a somewhat welcome change since I was struggling with sleep deprivation (only 2-3 hrs/night due to anxiety and pain) for at least a month now. Of course, I can't function with this drowsiness so I hope it will only last a very short time and may be the result of my body just getting used to it. No difference with the pain- but again, it has only been 3 days.

M.


12/08/2013 04:57 PM
maddiesgram
maddiesgram  
Posts: 2431
Senior Member

Hi Mel,

I've not taken Gralise, but have taken Gabapentin for almost six years now. I take a high dose of 800 mg./ 4 times per day, a dose that we worked up to in order to fight the burning pain. No, it does not nearly take all of the pain away, but I can tell you that it WILL lessen the burning type of pain. Other types of pain from RSD I have not found this to help very much at all. I hate to tell you bad news, but that is my experience. And, even though it sounds trite, we truly do all experience our pain differently and we will respond to meds differently, too. I don't have many side effects, but this high dose of Gabapentin has caused me to be more forgetful and less sharp mentally, according to my doctor. When I describe things about forgetfulness or feeling "dull" he always says that it's my Gabapentin. His simple explanation to me is that it keeps the nerve endings from "firing" normally to help ease the nerve pain, but there are also nerve endings in our brains and they are affected. I don't know if this is correct, as he has surely been wrong before, but it makes sense to me.

The side effects you are feeling like sleepiness will almost surely go away in a few days or a couple of weeks. It takes a bit of time to adjust to a new medication or a new strength of the same medication, and sleepiness is common early on. I hate to tell you that it will probably not last because I do REALLY understand how hard it can be to get the sleep we need! On the other hand, as you said we do need to be able to function and so just be really careful the next few days and the sleepiness will likely go away.

I hope you get good relief without many side effets! So soon after your diagnosis I know that all of this can be overwhelming! I just always tell everyone to commit to this group, as there is much to learn here and people who will care. I sure hate that you need it, though. Let us know how you're doing in a few days!

Hugs,

gail


12/08/2013 05:43 PM
cfthb
cfthb  
Posts: 1022
Group Leader
I'm an Advocate

This question of gabapentin vs. Gralise is very interesting, by which, in this case, I mean confusing. I haven't done a thorough search about this yet, but there are some strange concepts listed for each formulation.

For instance, in RxList, they make this statement: "GRALISE is not interchangeable with other gabapentin products because of differing pharmacokinetic profiles that affect the frequency of administration." Now, I can see that if dangerous overdosing were a possibility, but, within reason, it would be pretty hard.

Gabapentin is unusual in that its bioavailability is NOT dose-proportional, which is way anti-intuitive: The more drug taken, the lower its bioavailability. Here's another direct quote from RxList:

"Gabapentin bioavailability is not dose proportional; i.e., as dose is increased, bioavailability decreases. Bioavailability of gabapentin is approximately 60%, 47%, 34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided doses, respectively."

With all of that known, I find it hard to believe that anyone can claim to know the blood concentration if someone took both gabapentin and Gralise.

I wound up getting really into this question, and did a scientific search for 2013. I found three publications which, although they purport to clarify the mechanism of gabapentin, they're all of the same general form:

They list all of the receptors that gabapentin is known to have zero affinity for, including those that were really surprising, like the GABA receptor, and those for opioids, benzodiazepines, most adrenergic and muscarinic receptors, etc.

Here's the most complete (15 pgs) paper, which is a 15 page review called "Implications and mechanism of action of gabapentin in neuropathic pain":

http://www.thblack.com/links/RSD/ ArchPharmRes2013_36_237_mechOfAction.pdf

The bottom line, for me, is that much research remains to be done before the way gabapentin dulls neuropathic pain is known with any certainty. And, before someone sheds some light on this, no one will be able to predict its side-effects with any certainty.

Gail, I suspect your doc has no more of an idea of why gabapentin exhibits its side-effects than I do, and his explanation is enough to satisfy the average patient. I know when I was taking the stuff, up to 5.2g/day at one point, I had about every neurological effect you could name, and I hated it. Hopefully, a derivative will be developed that minimizes these effects, but until one is, I'd be careful of any explanations as to why gabapentin does what it does.

Howard

Post edited by: cfthb, at: 12/08/2013 06:04 PM


12/08/2013 07:54 PM
Mel1969
Mel1969  
Posts: 43
Member

Gail- Thanks for your reply. I will post any updates in case others are interested.

If anyone else takes this or has taken this, I'd still be interested in hearing your experiences.

Howard- thank you for the reply. I have to admit, I don't understand it. is it just me or does anyone else understand it? I'm not sure what you mean. I don't understand the medical terminology. Are you saying more medical info/research is needed to confirm side effects to this med? Sorry if I sound like an idiot, but it just didn't make sense to me.

MEL


12/08/2013 08:36 PM
maddiesgram
maddiesgram  
Posts: 2431
Senior Member

Hi Howard,

I didn't intend to be giving anyone a scientific explanation of what Gabapentin does. I did state VERY clearly that "I don't know if this is correct" and that my doctor had SURE been WRONG before. Also, I simply stated that this was a "simple" explanation that MY DOCTOR GAVE ME, not that it was scientifically proven. I wasn't being a teacher of some advanced medical knowledge, but a fellow sufferer telling the story of what my doctor said to me, which by the way I did not mention, was a VERY INSULTING way to be spoken to and therefore I didn't like his explanation. Nevertheless, I did state that it "makes SENSE to ME" and that was ALL that I said, because it DOES make sense to me. I did not claim a truth that could be proven or anything at all like that. I see NO REASON FOR ME TO BE AFRAID TO POST HERE ABOUT WHAT MY DOCTOR HAS SAID TO ME!!!

Howard, I would make the point that YOU should "be careful" as to assume to know what my doctor does or does not understand about Gabapentin. He has gone through medical school- two fellowship programs (and you have not), so I think that he WOULD know more than you do, albeit your professor days. I stated simply what MY DOCTOR SAID TO ME, and I do not appreciate you telling me to "be careful of any explanations...". I do not think there was ANY valid reason for you to call me out on this in a manner that sets you above me in tone, and I do not plan on "being careful" about a simple story that I share with this support group. By the way, your comments to me make me feel FAR FROM SUPPORTED in this, a SUPPORT GROUP. That really wasn't necessary and people have guessed at things in this group almost daily for the YEARS now that I've been here.

I would think perhaps the leadership of the group would better serve the members if you SUPPORT rather than put down. By the way, FYI, almost NOBODY in this group will know what bioavailability is, so if your motive in talking about it is the education of our group, perhaps you should begin there. And, IF there isn't anyone who truly knows how Gabapentin works and creates certain side-effects, then isn't ANY SPECULATION about it or ANY SPECULATION about ANYTHING just as bad as the simple story I told about my doctor's words to me? Also, why don't you call out everyone here who is ALWAYS GUESSING about what causes our problems with traveling in an airplane, etc., and most everything we talk about. NONE OF US, INCLUDING YOU, KNOW WHAT CAUSES OUR RSD OR SIDE EFFECTS OR MANY OTHER THINGS. Why tell ME to "be careful" when I haven't seen you tell anyone else that lately.

Howard, a good leader is foremost a great servant. You CAN quote me on that if you want to. It would be nice if you didn't set yourself up as superior. It doesn't come off well and being more intelligent, contrary to what you might think, does not make you a better human being.

gail


12/08/2013 08:56 PM
cfthb
cfthb  
Posts: 1022
Group Leader
I'm an Advocate

Gail -

I can't imagine what has caused such a reaction to a post that I thought was supporting you! When I ended with "Hopefully, a derivative will be developed that minimizes these effects, but until one is, I'd be careful of any explanations as to why gabapentin does what it does.", I wasn't thinking of you in the least! I was making a general statement that had nothing to do with your doctor or you.

I'm not going to bother answering your ad hominem insults on a public post, which was inappropriate and best handled via PM. I also doubt that any member would agree with you that my standard way of handling things is to put them down instead of support them. In fact, if any member feels that I've behaved that way, please PM me.

Howard


12/08/2013 10:31 PM
maddiesgram
maddiesgram  
Posts: 2431
Senior Member

Howard,

I sincerely apologize if I have over-reacted. That being said, it escapes me how you do not see that you were taking a swing at my doctor by putting down how much he understands, taking a swing at me by telling me to "be careful" of what I say, and then generally taking a swing at MOST of US who are less intelligent and/or educated than you and thus fall into the peon group you refer to as "average" patients... what was it you said again? I just don't see these things as supportive at all. I am reading it again and again and still don't see it that way.

What then DID you mean by telling ME that I should "be careful of any explanations as to why gabapentin does what it does"? How was I suppose to take that and in what way do you tell me to be careful? I just read about how gabapentin works and although I did not understand what I read I understood enough to feel that my doctor's explanation seemed very accurate although put in lay terms. The thing about communication is that one might be an excellent communicator in China who then comes to America and "we" don't understand anything he says at ALL." You must speak to someone in terms they can understand or your words are lost and mean nothing. My doctor was trying to do that and although I DESPISE it when a doctor is condescending when speaking to me, on the other hand much of the physician's vocabulary is beyond me and would benefit me zero.

Howard, it is aggravating to read posts that most of us will not understand and I deeply appreciate that one person has been honest enough to speak out and admit that they do not understand your post, either. Do you honestly not see the superior attitude you have when posting to some of us? Truly?

I am not putting this in a PM because we as a group need to know what we should "be careful" of or not and I am not communicating in secret about anything.

gail

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