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-   -   News about gabapentin (https://www.neurotalk.org/multiple-sclerosis/118736-news-gabapentin.html)

Debbie D 04-07-2010 07:41 AM

News about gabapentin
 
http://www.cbc.ca/health/story/2010/...entin-ubc.html

Hope I copied this right...anyway, I read this on a facebook page. Interesting. Glad my neuro took me off of it.

karousel 04-07-2010 07:49 AM

My DH is on this med for back pain...:rolleyes:...he has swelling and fogginess but his doctor keeps insisting none of it is caused by this med. He is a "changed" man since taking this med and I hate it. Printed the article to show him. Thanks.

FinLady 04-07-2010 08:04 AM

All my docs told me that not everyone tolerates it well, and it should only be used for pain caused by nerve signals getting confused. I'm wondering if a lot of docs misprescribed it? Or did the company's info lead to that issue?

I'm one of the lucky few that do ok on it and doesn't have weight gain issues. It helps a lot for me - especially my Fibro pain and to keep those electric shock-like pains caused by the MS at bay. Hoping this doesn't make it harder for the docs to prescribe this for me. :(

legzzalot 04-07-2010 08:45 AM

I have to say this is the only one I am on that helps with the creepy crawly skin.

SandyC 04-07-2010 09:03 AM

Jim was on this for many years and even had multiple seizures when an intern took him off it and neglected to ween him during kidney failure. When Jim weened off the drug he lost about 30+ pounds. No kidding and the swelling is gone except for humid days. We look back at the pics of him and cringe at how swollen he looked on this med.

sabimax 04-07-2010 10:59 AM

gosh you get me scared, but on it for quite some time now... and on it for nerve pain, tingling pain that hurts like heck... this med is the only one so far that really makes the tingling pain stay away... I get the numbness feeling as always but the tingling pain does not come much yeahhhh

good to be informed though, so thanks... I always wonder with both meds as I am not a medicine taker well... but take that and baclofen now... and sometimes wonder if could do without or not...

hugss all, sarah

Aarcyn 04-07-2010 11:27 AM

That seals the deal for me. I have been reducing my gabapentin recently. Today will be the day I take one more out of my pill regimen. I was not sure it was doing anything anyway. Thanks.

Debbie D 04-07-2010 12:32 PM

It never really reduced my neuropathic pain...Cymbalta actually helped me more, but I don't take it anymore.

barb02 04-07-2010 12:49 PM

It helped me for awhile, but I kept having to increase my dosage. I did not want to increase it yet again (was up to 2700 mg), so i stopped taking it last summer.

Cyn -- make sure you slowly taper off of it. My doctor had me taper down too quickly, and I was miserable for about a month. I did lose about 10 pounds.

I tried lyrica for a few weeks this past fall and it did not help -- just made me more constipated.

Aarcyn 04-07-2010 02:39 PM

Thanks Barb. I did know to taper off. I am down to 4x a day.

I have gained 10 pounds since starting about 4 years ago. How great if it would come off again. I still have a few tops that I cannot get rid of, I like them too much so maybe I can comfortably wear them again. Would be nice.

Debbie D 04-07-2010 05:06 PM

Wow, Barb, that is a high dose!!

ol'cs 04-07-2010 05:53 PM

Neurontin
 
marketed as "gabapentin" is a placebo to greater than 90% of the people who take it. It has been supplanted by "Lyrica" because it was coming off patent (it is a simple structural amino acid analog, discovered a long time ago). The only difference chemically between Neurontin and Lyrica, is that they broke open a cyclohexyl ring to gain a "patentatable difference", which is laughable how they bamboozled the FDA by this one. In the meantime, millions of people with chronic pain will have to spend (waste) a big buck to "try" Lyrica for two weeks before they can go back to their doctors and get some "real relief" from opioids.
And that is the world of drug discovery these days. Find something that is "minimally useful" for one reason or another (low toxicity, few side effects) and make it patentably distinct, so the FDA will buy the BS and approve it, then, when ten million prescriptions have been filled, and the the `real story`of it`s ineffectiveness comes out, take it off the market, but keep the "change" to the pharmaceutical company.

SallyC 04-07-2010 06:09 PM

I took Neurontin for a short time..It made me dizzy and sick, I stopped it at a low doseage, so didn't have to worry about withdrawal.

I am off all of the poisons now. The only thing I take for pain, is aspirin or aleve if pain is real bad. For really really bad pain, I like a darvocet or percoset fix. :D

Obviosly, I am one of the lucky ones, who is not plagued by chronic nerve pain. My love and sympathy for those of you who are..:grouphug:

tkrik 04-08-2010 08:53 AM

I am one of the lucky ones. Neurontin has been a godsend for me. I did not gain weight or have any personality changes that others talk about. I still get some breakthrough pain as well as nerve pain during spinal flares. I've been on it for 7 years now. However, I am on a very small dose compared to others - 300 mg in the a.m. and 600 mg before bed.

FinLady 04-08-2010 10:39 AM

Quote:

Originally Posted by tkrik (Post 641982)
I am one of the lucky ones. Neurontin has been a godsend for me. I did not gain weight or have any personality changes that others talk about. I still get some breakthrough pain as well as nerve pain during spinal flares. I've been on it for 7 years now. However, I am on a very small dose compared to others - 300 mg in the a.m. and 600 mg before bed.

I'm on 900mg before bed and 300 mg each as needed during the day. Sometimes it's just the AM, sometimes before each meal depending how bad my TN gets. My Rhuemy told me that if I hit over the 2100mg total mark - we're gonna search for something else. Almost there, but so far it's the only thing that touches my pain.

Debbie D 04-08-2010 04:13 PM

It's so weird how it works for some but not others...:confused:

I know it helped the neuro pain when I first began taking it, but stopped after a while and the dose kept going up, up, up...glad I'm no longer on it.
I hate the spasm pain so much more than the nerve pain...

dmplaura 04-08-2010 08:15 PM

I had horrendous side effects on this medication. I stopped taking it months ago, but the withdrawal from the drug was horrible in itself getting off it.

barb02 04-09-2010 08:37 AM

Laura, I agree! I was dizzy and nauseated for over a month.

debw 04-09-2010 09:18 AM

So this is Lyrica? I took it for a while, made me swell and I became dizzy, I was on it when I first started noticing my dizziness, thought it was the med, then went off, guess what, still dizzy. :(

ykonstan 04-09-2010 06:49 PM

my gabapentin experience
 
i'm gabapentin user for 10 years, i take very big dose - 2400mg per day. May be i had some side effect in the beginning - just don't remember, but it didn't change my weight a bit. So, lyrica did – and I stopped taking it – didn’t work for me.

kayyla 04-09-2010 09:24 PM

"Hope I copied this right...anyway, I read this on a facebook page. Interesting. Glad my neuro took me off of it.[/QUOTE]

Hi Debbie and all.I am new here.I am a 54 yr old f with nueropathy in my feet.I have some choice words for Phizer.Ty for posting about gabapentin but the company is making a killing from their new drug lyrica so it wont hurt them at all.
my post is a warning to any considering lyrica or gabapentin for that matter.
aprox a yr and a half ago I began lyrica for the pain in my feet.
Now if you have severe debilitating pain that absolutley nothing will help.....I can see using this drug.
My experience.I have become an angry ,sad depressed fat person with a host of other side effects w lyrica.At 250 mgs hard to remember anything.Amnesia is a side effect.
oh at first I thought it was good pain gone but then began stumbling around my house at night(only can take it at night)as tho drunk and i dont drink.
ok so after 60 lbs weight gain and severe depression,I tried to drop a quarter of my dose last summer,,,well instantly suicidal.crying etc...next day bk to dose bk to normal.
It scared me.I am now on a doctors taper I am of the mind to do it in a weelk as phizer says or 5 weeks the week is appealing because then I would be done with this stuff.Just suck it up for a week.
anyway this drug is the worst i have ever encountered.It is actually gabapentin in a difforent form,,so the co just switched it up a bit.Lyrica binds more tightly to the molecules.
It will ruin your life for sure.It has mine so far.
I am trying other pain meds just to get rid of lyrica but getting rid of it is not easy.If anyone has tips they are welcome.
I would only take this drug if i was dying and nothing mattered.
Or the pain was so severe it didnt matter what my mood was.
Yes it has caused rotten teeth,,,,,yes mood so low its scary.Hair loss,swelling,,,,urinary problems,,,,and eyesight problems.
I am so done with lyrica and upset with phizer,,they just reinvented their drug to make more money.And take advantage of people in pain.
so there it is sorry for the long post but....please use at your own risk.
I pray I get my life back.
kayyla

Lady 04-10-2010 01:05 AM

Hi Kayyla,
Welcome to NT. This is a friendly place with lots of nice people. Thank you for your information, I am sure it will help some people judge the drug they take.

I hope we hear more from you. We love new people.:) Take care.

Debbie D 04-13-2010 05:16 PM

I read a report on CNN.com today that Gabapentin/neurontin has been shown to cause suicidal tendencies...
these darn drugs and the docs who use them off-label without knowing what kind of effects will show up...:mad:

Pink 04-13-2010 08:43 PM

Everyone tolerates drugs in a different way. I've taken it with no bad sides, but no real results. We are all different.

sabimax 04-14-2010 04:57 AM

Debbie, and all

I read the stuff when getting on neurontin, and I was informed by reading all the possible side effects, some being depression and some of the other things listed here... long time ago... why is it coming out like this is new news.. is what I wonder... I am reading the comments and now makes me wonder about being on it... but at same time it is only thing that keeps my face from tingling in PAIN when humidity is up! I have not gained any weight from this medicine, have not had extra teeth issues... have not felt down from it...

so like most meds, as many do list side effects it depends on person body and go for the ones you feel comfy on.. lyrica I did not do well on... but the gabapentin/neurontin I have been fine with...

good luck all, sarah

barb02 04-14-2010 07:09 AM

Sarah, If it is working for you, I would stay on it. While I did gain some weight on it, It was worth it to me while it was working. I only stopped taking it because I was at a fairly high dose, and did not want to keep increasing it.

SandyC 04-14-2010 08:14 AM

I agree, if it's working for you then you should take it if you do not have side effects.

Debbie D 04-14-2010 02:52 PM

I also agree that if it works for you, then take it...I just hope that the docs know and also inform their patients what side effects can occur. I was never, ever told about these side effects when I was prescribed Gabapentin by a former neuro.

crazyhorses 04-20-2010 09:33 PM

Quote:

Originally Posted by Aarcyn (Post 641557)
That seals the deal for me. I have been reducing my gabapentin recently. Today will be the day I take one more out of my pill regimen. I was not sure it was doing anything anyway. Thanks.

Hi Aarcyn! I noticed your post stating that you have been reducing your gabapentin recently. I want to do the same. My foot doctor is out of town for 2 weeks and there is not anyone else in his office taking care of his patients. I have seen quite a bit of improvement on the drug but I have decided that the side effects when trying to get off of this drug is not worth it. If my doctor would have told me about the possible withdrawl problems, I probably would have never gone on this medication. How is the reduction working for you? I take 300MG AM and 900MG PM. I have only been on this dose for about a month and want to reduce but I am afraid to. Any suggestions?

Debbie D 04-21-2010 07:27 AM

Crazy, I would wait until your doc is back and available so that you can discuss withdrawal together...

barb02 04-21-2010 08:48 AM

Crazy, Withdrawl was really hard for me. I was on a larger dose than you. I would also wait until you can discuss this with your doctro. It should be done very slowly and your doctor should be aware that you are undergoing withdrawl.

S-Mo 04-24-2010 02:58 PM

RE: news about gabapentin
 
I work for a pharmaceutical company and know a lot of information about this drug in particular. I also have MS and was prescribed a similar drug last year before my diagnosis because of neuropathy I started to have. It didn't work, and 8 months of tests later we knew it was because of MS and spinal cord lesions and not the drug not working.
I couldn't even begin to tell you the witch-hunt the FDA has for the drug industry. And I know we're at fault for many things. (I've been in sales for 11 years with the same company). The lawsuits have gotten CRAZY...and people wonder why drugs cost so much money? To give you an example, I cannot compare Drug x to Drug Y if there are not 2 Double-blind, randomized, placebo-controlled trials comparing the two. If I do, I am promoting "off-label" and could be penalized for the attached article of improper promotion. Again, because of my experience with this particular med, I know for a fact that gabapentin is used for many things off-label and it's because the doctors have a lot of experience with it in these areas. I feel bad that the public is so mis-informed on the realities and regulations of the FDA.

Debbie D 04-24-2010 05:53 PM

I agree that many meds are used off-label, mainly because there are so few drugs for disease symptoms like MS...so the docs have to use the arsenal at their disposal, no matter if it's designed for the disease they're treating or not.

I was on Vioxx before they took it off the market, and to me it was a miraculous drug. I had no arthritic pain! I would have been willing to sign a waiver promising not to sue the drug company just so I could have it again.

I think that despite the stringent trials and studies that meds go through, one that has deliterious side effects slips through, as in the case of Vioxx.

Still, I would like full disclosure of side effects by the pharmas...then let the doc and me decide if the risk is worthwhile.

As for gabapentin, it didn't seem to help my neuropathic pain, either. Cymbalta seems to reduce it quite a bit...another drug used off label:rolleyes:

SandyC 04-25-2010 02:33 PM

You guys made me remember something when Jim was in kidney failure. He kept repeating "gaba gaba gaba" and we thought he was just delirious from being septic. Turned out we now believe he was trying to tell us he wasn't getting his Gabapetin. Sure enough he had those seizures and well, you know the rest. That just popped in my head.


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