Neurontin-long term consequenses?Posted by Lolly O on 3/06/03 at 08:41 (111979)
Reading several posts on this forum I realize that some folks have been taking neurontin for a long time.
What are the long term effects?
Is there an alternative? (of course it too could have long term effects)
How long can you take neurontin?
Re: Neurontin-long term consequenses?Pam S. on 3/06/03 at 14:21 (112028)
I have consulted with a pharmacologist about all of the medications I take. She has advised me that neurontin in very safe and does not travel through the liver which I like. I have been taking it since 99 and began slowly working up to 400mg. only at night. Sometimes if my burning is bad around dinner time I take l00 mg then and it seems to calm things down. You just need to see how your body reacts. I also take this drug for a condition know as restless leg syndrome. It can also help headaches I am told. Based on what this very respected physician has told me, I feel safe taking this.
Re: Neurontin side effects and other consequencesSharon W on 3/06/03 at 14:33 (112031)
Here is some more information about Neurontin:
Neurontin is an anti-seizure medication that happens to be very effective
for relieving nerve pain. It does help a lot of people with neuropathy. Of
course, no drug is perfect, and while Neurontin doesn't have as many nasty
side effects as a lot of other drugs, there are indeed some things that you
should know about it.
First of all, it is VERY IMPORTANT to take this drug as prescribed, and
never to skip dosages. Neurontin is not addictive, but the body does become
accustomed to having it in the bloodstream. If it's more than 12 hours
between dosages of Neurontin, the drug will be depleted from the system and
that can lead to seizures.
Neurontin is eliminated by the kidneys without ever really being metabolized
by the body. It normally takes about 5-7 hours for half of the prescribed
dose to leave your body. This is affected by the health of your kidneys,
however, so if you have (or have had) serious kidney problems, the doctor
who prescribed this drug should be told about it.
The most common side effects are sleepiness, dizziness, clumsiness, and
fatigue. Somewhat less common are abnormal eye movements, tremor, crossed
eyes, and blurry vision. Two side effects often complained about by people
taking this drug for nerve conduction problems are forgetfulness and weight
gain. However, these did not show up as 'common' complaints when this drug
was originally tested on patients with seizure disorders who were already
taking another seizure drug.
The official rate for 'amnesia' caused by Neurontin is only 2.2%, but it
really seems to me like a LOT more than 2.2% of the people who take this
drug for nerve pain say they've experienced problems with memory, especially
short-term memory. (I'm much more forgetful since I started to take
Neurontin, and I've heard others complain of the same thing.)
Neurontin is generally not recommended for pregnant or nursing mothers. The
drug does pass through into the mother's milk.
Re: Neurontin side effect-possible SEIZURES if dose skippedLolly O on 3/06/03 at 15:04 (112037)
You said 'If it's more than 12 hours between dosages of Neurontin, the drug will be depleted from the system and that can lead to seizures'
That scares the HECK out of me!!!!!
If there is a chance Neurontin does keep TTS from getting worse, thats one thing.
But just to keep down pain...well I will keep icing.
re: Neurontin side effect-possible SEIZURES if dose skipped
Re: Neurontin side effect-possible SEIZURES if dose skippedSharon W on 3/06/03 at 15:22 (112042)
Remember that Neurontin is originally a drug used to control seizures, and it was tested on people with seizure disorders. And there are people who take HUGE doses of this drug 3 or 4 times a day. I'm sure that the risk of seizures would be relatively low for people who do not have a seizure disorder to begin with, and for people who take Neurontin at lower dosages. It isn't a COMMON side effect; I included it because it is a serious (but rare) possible side effect that can easily be AVOIDED by taking your medicine regularly and not skipping doses.
Re: Neurontin side effect-possible SEIZURES if dose skippedPam B on 3/07/03 at 10:56 (112123)
I am confused by your info Sharon, my doc told me that if you dont suffer from seizures that a skipped dose will not cause one......I take 2700mgs per day and was told that side affects can occur if I stop taking it altogether but that seizures was not a worry......now that I have read your post here, I am going to question my doctor again about long term usage and the possiblity of seizures again......it is scary to take these drugs and it seems everyone has a different opinion.....I appreciate what you have written and will surely talk to my doctor on the 20th.....but I do know this, I have missed several doses but it did not affect me in any way that I could see.....of course it does have enough side effects that maybe I just didnt notice since I am also on so many other meds....I know that taking MS Oxy and MS IR my fatigue is terrible......thank you for your info, it will be a priority for me to request additional info for sure......thanks again :)
Re: Neurontin side effect-possible SEIZURES if dose skippedSharon W on 3/07/03 at 11:48 (112133)
Your doctor's info is probably more accurate, if that doctor is a pain specialist; I imagine a pain specialist would probably be more expert on the drugs often given for pain. When I first started on Neurontin my pod told me that it's important to take this one regularly and not skip doses or quit it suddenly because if you do there can be a risk of seizure and other side effects. I was going by what my pod said and by the 12-hour thing I found later in my own research. But you are probably right; I find this issue confusing, to be sure, and most doctors usually go by the side effects and recommendations listed in their PDRs.
Other than some doctors' comments, the info out there about Neurontin side effects, etc. is mostly based on the manufacturer's research -- and that research was done with subjects who had seizure disorders serious enough that they needed an 'adjunct' medication (Neurontin). That is the only use that Neurontin is FDA approved for -- as a medication to take for seizures when the patient is already taking the max dosage of something else and needs another drug to boost the anti-spasmotic effect. The patients this drug was originally tested on had serious seizure disorders, so it's not surprising that not taking one of their anti-seizure meds could trigger a seizure.
Anyway, I think the smart thing to do is be careful not to miss a dose; then you're safe in any case.
Re: Neurontin side effect-possible SEIZURES if dose skippedPam B on 3/07/03 at 12:07 (112137)
Sharon, I found this website that states never stop the drug abruptly as it can cause seizures in patients that dont suffer from them.....but it does not indicate missing a dose causing seizures which is pretty much what my pain managemnt center told me, I tried to link the website but it didnt work so here is the address if you would like to look at it.....it is stating the usage for migranes, but the basic information is the same thing.....thanks for you input :)
Re: Neurontin side effect-possible SEIZURES if dose skippedPam B on 3/07/03 at 12:17 (112140)
:) well, surprise surprise, it did link it by input, but wouldnt by draging the link :) anyway, I hope it might help you a little, I am still looking for more concrete info......but, I have found if you call your pharmacy, they will advise you about these type questions, which I think I will do just for safety......I think it helps me but I hate the side effects.....clumsy and fatigued all the time.....at times you might think I was drunk especially since I started the MS Oxy and MS IR.......but my pain is less and for that I am thankful......I am also having nerve blocks and now they are considering me for a spinal stimulator......seems that PF and spur surgery left me with more problems than I ever thought it would.....but at the time, I really had no choice since we tried everything but nothing worked and I could not even put my foot on the floor.....so I guess sometimes you have to take the chance even though you know the outcome may not be what you expect......I have alot of pain now, but at least my foot is able to carry me......but I can tell you, RSD is a scary disease that has a mind of its own......it rules you, you sure dont rule it.......good luck and I hope that site is a little bit informative.....and I will continue my search :)
Re: Neurontin side effect-possible SEIZURES if dose skippedSharon W on 3/07/03 at 14:01 (112153)
Thanks! That does help to clarify things. I was looking but cannot find that reference again, I saw it a while ago -- but I did come across at least one reference explaining that the half-life of this drug is 5-7 hours so if you're taking as much as 300mg of this drug three times a day, and more than 12 hours go between doses, Neurontin will be almost completely out of your system and side effects such as seizures can occur. But it didn't say anything about whether or not that applied to patients who weren't taking Neurontin for seizures in the first place.
It sounds to me like there are TWO factors involved here - the fact that if you are a patient with seizures then you need to take your anti-seizure meds on time, AND the fact that the body becomes accustomed to this drug and thus seizures and other side effects can possibly occur when the drug is withdrawn. Anyway, I believe in playing it safe; I'm very careful to take this one on time (well... at least within 2 hours of being right on schedule). Because ANY possibility of seizures scares me - no matter how tiny that possibility might be!
Re: Neurontin side effect-possible SEIZURES if dose skippedSharon W on 3/07/03 at 15:15 (112165)
Yeah, I have side effects from Neurontin too; my feeling is that there are probably some side effects (like the fogetfulness and feeling tired) that people who have been on other anti-seizure meds for YEARS might have already grown accustomed to and didn't even notice when they participated in the Neurontin study. After all, many of the side effects Neurontin has also apply to other anti-spasmotics. Being tired and forgetful might not seem like anything new to them...
I am terrified of RSD. I know what TTS feels like, and I've read quite a few posts now comparing the two and saying that the worst TTS pain is MILD compared to RSD. So I can see why pain control might be top priority for you, you wouldn't even be able to FUNCTION without it! Good luck to you and I hope you can find something that will put the RSD into remission...
Re: Neurontin side effect-possible SEIZURES if dose skippeddiana on 3/08/03 at 10:45 (112240)
There was an article in my newspaper that studies had found that Nuerontin was helpful for hot flashes but was not recommended because of possible side effects. I was told by a pain management specialist that you could get sort of 'immune ' to being helped with pain by being on it for long periods of time. He said if you went off it for 3 weeks periodically you would get back to your 'set point' and it would help you better again. Diana
Re: Neurontin-long term consequenses?Rich L. on 3/08/03 at 21:52 (112303)
Hi Lolly, I was recently diagnosed with bilateral TTS. My PCP tried a course of Neurontin (Gabapentin) with me but made the constant constipation not worth the small decrease in pain levels. Anyone taking Neurontin should investigate the website http://www.citizen.org/eletter and click on Neurontin. Very important information there, indeed. Also a trip to the Pfizer website will yield a 27 page PDPL on Neurontin. This is a real bummer for me since I primarily stand for my employment and WAS an avid backpacker/hiker.
Re: Neurontin side effect-possible SEIZURES if dose skippedPam B on 3/09/03 at 20:14 (112381)
Thank you for your thought and concern about my pain, but pain is pain and when you hurt you hurt........all pain hurts the differnce with this is it doesnt stop hurting which is what makes it bad.....or you can feel good today and tomorrow wake up and cant hardly walk.....they have me on morphine and than does help some.......am considering a spinal stimulator inplant........but that is not confirmed yet.......again, thank you for your concern,it is nice to come someplace sometimes where people do understand :) good luck to you
Re: Neurontin side effect-possible SEIZURES if dose skippedPam B on 3/09/03 at 20:17 (112383)
hmmmmmm, think I will ask that question when I go back.....but I think she was talking about cutting me back on them to make sure they are even helping much.......I take 2700 mgs per day.......but have heard of people taking as much as 4000????? I do get lots of side effects from them but I think they help a little so I keep taking them.....will keep ya posted :) thanks and good luck to you
Re: Neurontin side effect-possible SEIZURES if dose skippedTammie on 3/10/03 at 14:47 (112448)
Hi Pam, I read your note here and sounds as if we are in about the same area as I am being considered for the spinal stimulator also. He wants to try two more things as this is a new specialist that my pain dr. sent me to see and he wants to do his own block to see what happens, then go from there. If any relief at all will do a ongoing epidural for a few weeks, if nothing from the block will do the spinal stimulator. I have had several blocks and so many drugs, that i do not want to take any more!
I have one thing to add about the neurontin I was taking 3,600 per day I took my self off in two weeks no trouble at all! Luck maybe maybe not? They put me on something called topamax as the neurontin made me to foggy and the sweet thing was so verry true with me I swear! The new Pain doc said if it is not helping me in this last 8 months most likly is not going to so we are trying this other one. If you would ever like to chat about RSD please My email Is (email removed) I must add I dont alwasy get on line as I cant always handle it. I have not been on for a few days and owe a few letters so take care and good luck would love to hear about what they do to u!