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Avatar universal

Neurontin, long term use

I have been taking Neurontin for 12 months now, since nerve damage occurred during total hip replacement surgery last year.  I am currently taking 3600mg/day (900mg x 4) and have been at this dosage for 6 months, previously at 2400mg/day.  I have recently had a neurostimulation system implanted for the neuropathic pain, but use of Neurontin is still called for at this point due to symptoms.  My concern is with long term use and side effects of Neurontin (mid-forties male, 170 lbs).  Can you please enlighten me regarding this question?  
Thank you in advance.
27 Responses
Avatar universal
Neurontin is a safe and effective treatment for pain. There are many patients with painful neruopathy who use Neurontin for many years. Typically the side-effects include sedation, dizziness, and imbalance. Therefore, I do not see a problem with you continuing with Neurontin use, as long as you are tolerating the previously mentioned side effects.
Avatar universal
Just recently I watched a program that outlined how the drug company that developoed Neurontin actively promoted this drug for uses not allowed by the FDA.  Pain management was one of these uses.  I thought that if you searched medical abstracts and looked up studies done on these drugs you could be sure that what you are taking has been studied.  Apparently doctors were paid to write reports in favour of this drug and reports were authored and then doctors looked for to put their names to the study. I guess you can't trust anyone. I know my daughter took Neurontin for RSD pain and it did nothing to reduce or improve her symptoms.
Avatar universal
I'm happy for those that respond to, & can afford Neurontin. I
feel the verdict is still out on it's greatness. I had temporal
pain, some mental-wondering when it was bad, along w/ slight
tremors. My new `1st time' appt w/ a Dr., gave me an RX to fill immediately of 300mg 3 X day. While checking out, the
Neurontin sales-rep. showed up. The doc said `she just wrote up another script' & the rep. replied, `you'll be in Maui in 6 mo!'
I thought it was a joke. Well, the script wasn't avail. in generic. 1 mo=$185.00. Ins-break ONLY cost me $85.00 for 90. You
can't just stop it or you could have a seizure says it's info,
& it can CAUSE memory problems & tremors in some. Read the insert AFTER the 4th pill & I had called the ofc. of severe
confusion. Ofc. said to keep taking! Well some of us can't afford mental confusion or we can't work to afford $185 a mo.
Got a new Dr. Got a med. for $7.85 a mo. Got extra now to go to
Maui!
Avatar universal
Just FYI, the reason the package insert for Neurontin says that you can have seizures if you stop is that Neurontin is officially an anti-seizure medication. (As noted above, it is also used for other purposes). So they HAVE to write that. If someone were theoretically taking it for seizures, they have to be told not to stop taking it.

Stopping Neurontin does NOT *cause* seizures if you don't already have them.

Now, it turns out that Neurontin is not a very good anti-seizure medication. People with epilepsy do not take it.

But it *has* been found to reduce neuropathic pain in some people. So doctors go ahead and use it for that-- and why not? It is excreted through the urine, so there is no problem with buildup in the liver. That alone places it head and shoulders above many other medications. Doctors who see patients are hard-core pragmatists-- if it works, they will use it. Let the research come later. As you can imagine, there are both plusses and minuses to that approach.

Neurontin does have some CNS effects-- some patients report memory problems, dizziness, sleepiness, etc. You would expect some of that because it was originally a CNS drug (to stop seizures), right? Note that the side effects are worst at the beginning, then tend to reduce over time (although not vanish).

Just some info to counter some of the confusion. Hope it's helpful.
Avatar universal
I take 2700 mg of Neurontin daily and have no noticable side effects.  I works very well for me.
Avatar universal
Before I did my own research on this drug, I tried it twice. Both times, the dose was increased gradually until I was at a "normal" level. At about that time, each time, my small intestine was shutting down, causing blockage. Since I have an ilestomy (and no remaining colon) I can onlt speak to the small intestine problem.
The only oth med I ever took that could cteate the same symptoms is codine(sp?) in any form.

I was taking it to try for a reduction if spinal cord seizure (intensity, frequency, and/or duration.
Avatar universal
I didn't want the pro-Neurontin folks to be outnumbered. :-) It was a life saver for me. Been taking it a year and a half. My memory is a bit softer now, but that's better than writhing in pain all day!
Avatar universal
This is for maxj - -

I was on Neurontin for several years, 2400 mils / day.  I started out at 600/day, but pain kept returning so I ended up at 2400, pain returned so I decided that I didn't want the  drug any longer.  WHATEVER YOU DO, DO NOT stop this drug cold turkey. . . the side effects are like nothing you've ever experienced in your life!  My wonderful doctor's PA (Dr. was in surgery all day) would not refill my script (didn't realize I had no refills left) w/o an appt., which wouldn't be for 3 weeks.  By day 2, I was crawling out of my skin.  Screaming at everyone (including my boss) and unable to sleep.  My primary put me back on the drug and weined me off, however, the "weining" off period I think was too quick (5 days).  Then, boom, anxiety, headaches, insomonia, weight loss, problems with vision, itching, body aches, you name it!

I had to drop my evening college course and take 3 days off from work!  I have been Neurontin free since July 11th.  I am still not sleeping (even with sleeping aid prescribed by doctor)and have had leg aches/cramping non-stop since being off the drug.  I am under my primary's care, he ran some bloodwork last week and I see him tomorrow.  I don't know, I was on the drug because of a pinched nerve in my neck, but maybe it was masking other problems that I was having.  Don't know.

But, I just wanted to warn you . . . especially where you are at such a high dose (I thought 2400 was max?), don't stop cold turkey.  It is no fun! And, on a side note, rumors are that the FDA feels that this drug is being prescribed "way to much" for uses it was not intended for.

Good luck.
Avatar universal
Thanks for your great info. Earlier I said the verdict is out in
my mind & you explained why. If `Kit' did a search here, the FYI
by this forum even states sudden stop can cause a seizure in non-
epileptics. It's great if it works & in pain you'll try or pay
anything. That's my point. Once hooked, they up the dose. I'd
like to know if it's so great, why is dose 300 up 4000 mg a DAY?
In other countries it's sold in generic form `Gabapentin'. It's
safe? If you don't stop slowly your brain & body can go into a
permanent spiral. Non-addicting? Your body didn't crave it but
I wouldn't want what happened to you. The docs aren't monitoring
tests. I know someone on 2000 mg & they woke in pain. A call to
the ofc. put them up an extra 1000! Why so many thousands of mg?
Why not 100 or 300? Those #'s scare me. Doesn't sound like all
are pain free either. I read:`it seems to help'. An MD said,`if
it's not really noticebly working in 60 days, something else less
costly should be tried.' Once this is off patent, we'll see if
the hype is there. I really hope Neurontin is the magic bullet
for many. Just be sure the Dr. is paying attention to you & still
looking for the source or evaluating w/ follow-up. I'm hurting
now w/ neck-nerve damage, numb hand & essential tremors. After my
EMG, maybe I'll ck. back.

Avatar universal
Hi Everyone--This is my 1st time posting in this Forum & I felt I needed to add my comments about Neurontin. I was diagnosed with PN about the 1st of this year. My EMG was negative, but the Autonomic Nervous System Testing Impression was that I had "laboratory evidence for an autonomic neuropathy." It showed I had "normal responses in the sympathetic nervous sytem, but abnormal responses in the parasympathetic nervous system." I don't understand what all of this means, but am learning slowly with the help of people at BrainTalk Communities at MGH, another great forum site.

I was started on 100mg of Neurontin at bedtime & told to work up 100mg each week until I got relief. After getting up around 1100mg I decided I did not like this med at all & did not want to take it for the rest of my life if I didn't have to. I felt I may have been started on it too soon without trying non-med options first. Anyway, I forgot my dosage one evening & the next morning I thought I was having a heart attack b/c I started sweating profusely which is one of the symptoms of a heart attack. Then I remembered I had forgotten to take my Neurontin the night before. So, don't forget your dosage - you will not like what you will go through.  

Another point I want to make is that I was initially told by my Neurologist to take it at bedtime. Another Neurologist I saw recently said that taking it only at bedtime is like starting all over again every day.  He said it should be taken throughout the day.  I'm not too sure about this so it needs to be checked out.  

Still another point I want to make is in weaning off Neurontin.  This last Neurogist said to drop 300mg every 3 days until off completely. I thought that sounded a bit drastic so I called my Pharmacist. (NOTE: Anytime you have a question about medicine, don't ask your doctor - ask your Pharmacist. No insult intended, but they are trained professionals about medications - your doctor is not.) She said she would check the book for wean-off which she did & it said to drop 300mg every WEEK (instead of every 3 days as the doctor had told me). I'm almost weaned off now so am anxious to see what my increased B12 might do to regenerate my nervous system.

I would also like everyone here to know how important taking B12 if for anyone with PN. I don't know about this Forum, but the BrainTalk Forum has wonderful stuff about B12. Again, doctors are not expected to be professionals on Vitamins so do your research.
Avatar universal
Did you know that MAGNESIUM (a very vital natural nutrient)
attaches to the SAME EXACT chemical receptor as NEUROTIN and exhibits its mode of actions?
magnesium can be used in place of neurotin in many persons for many different reasons with dramatic results.
i was AMAZED at what magnesium supplementation did for me.
most persons are deficient in this nutrient (it is easily excreted) and there are many disorders that magnesium will help.
do your research!!!!
there are many "rules" about magnesium!
i did over 90 hours of research on the subject. it is fascinating-- to think people are on neurotin and they could just try something natural that produces the same effect by attaching to the same receptor as neurotin.

PLEASE-- if you have any muscle rigidity, tremors, twitching, ANXIETY, depression, AGITATION, mitral value prolpase, heart palpatations, panic attacks, asthma, restless legs, and more-- PLEASE DO A SEARCH FOR YOURSELF ON MAGNESIUM DEFICIENCY. YOU WILL BE AMAZED.
you may even find yourself the answer you have been searching for for so long.
i cant go into all the important facts on this post-- so PLEASE READ AS MUCH AS YOU CAN ABOUT IT!!!!
some important points****
-you cant take a blood test for it-- its innaccurate-- will come out normal. you need intracellular measurements-- not blood tests!
-do not take magnesium supplements with calcium-- it interferes!
-slow-mag is magnesium chloride-- its a good over the counter supplement that favors better absorption (it has a small amount of calcium but not enough to interfere-- aviod calcium- mag combo supplements
-it is verysafe to take mag-- except in persons with kidney disease
-by taking it orally, it may take 2 weeks to get tissue levels back to normal and decrease your symptoms
- it is a very common deficiency and so widely OVERLOOKED!
- diuretics, caffeine increases magnesium loss-aviod these
-in severe cases you can get injections

it makes me so sad that A LOT of people will never realize this and never research or find this out-- and suffer for so many years.
Avatar universal
My doctor at first was going to give me neurontin but I was afraid of it.  He then substituted Elevil and that seems to be working. It is also much cheaper as there is a generic.  I could never afford the neurontin price and eat too.  The only side effect I seem to have is that I sleep through the night which is not normal for me.  I am generally up 2 or 3 times a NIGHT FOR  many reasons.  Sometimes because of the pain in my toes. Is anyone taking Elevil with success.
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