Neurontin and kidneys

hi. i take 300mg neurontin twice daily for partial seizures.
i have experienced a great deal of kidney/liver pain since i have been taking this medication(1 1/2 years now), along with abdominal cramps, bloated torso sensation, lethargy, and a lack of concentration and co-ordination/balance.

i have had liver and allergy tests and the results came back normal.

the pains vary from mild discomfort, to stabbing sensations in my kidneys that prevent me from sleeping.
as i have been seizure free for two years now, i would like to try and gradually wean myself off the medication. has anyone any suggestions as to good ways of doing this, and things to avoid.
thanks for any help,
a.b.

I've taken Neurontin 300 mg at night for fibromyalgia (all over body-aches type of arthritis) to help me sleep. I don't mind the dizziness and it works like a miracle to stop the pain -- but increasingly I have backpain over the kidneys. Am afraid the kidneys are working too hard and failing. Does anybody have experience with this?

My husband takes Neurontin 300mg in the morning and 300mg in the evening for a prostate neuropathic pain. He is relief from his prostate pain but has horrible backpain over the kidneys and neck pain too. He takes it for 1 month now. Do you think this side effects are going to dicrease? How long do you take it and are the side effects the same as in the beginning?
Thanks for your experiences...

I am the person who posted the above message about kidney pain as a bad side-effect of N. use for fibromyalgia -- I use the drug for muscle pain, and to get to sleep at night -- and am at the point of trying to lower the dose, as well as wean myself off of it, before permanent damage can happen to my kidneys (and I hate the brain-fog).

Some research into the chemical and physical effects of the med lead me to believe that it works by helping the kidneys take a certain substance out of the blood stream -- the same way that dialysis works for kidney-failure, so definately Neurontin will affect the operation of the kidneys (see posting on "husband taking it for prostate problems" -- is this because of problems urinating?).

There have NOT been any studies on how Neurontin works -- or dangers/side-effects of the drug --for any other use besides epileptic seizures. If a person is experiencing bad side-effects he or she should immediately contact the doctor who prescibed it and ask for a different med, or for the dosage to be reduced (don't just stop taking it, which is what a lot of people do about bad side-effects -- that could be dangerous.). Such use makes a patient a guiney-pig for research, and the makers of Neurontin have been under attack for aggressively pushing it for what are called "off-label" uses.

If the doctor won't listen to you about this, find another one. IT'S YOUR BODY and no one knows better how you feel inside of it. Also you could experiment with withdrawing yourselve from high levels of the dosage, or asking that the amount of the med in the rx be reduced...fast- withdrawal sometimes causes seizures (as I understand it) and of course you have the complete right to ask a doctor to listen to your symptoms and needs.

Also if you're a person who notices bad effects in a child or a spouse you should make it an urgent project to point the bad effects out to the doctor, to become an advocate for the person who cannot do it. Good luck. JanK in Portland OR (and I am not a doctor, just a person with a lot of experience in surviving the American health system.)

Hi!
I wrote the message regarding my husband. I am writing from Europe, Belgium so sorry for the mistakes.
I thank you for the information you gave me.
My husband has no problems urinating, only a pain to the prostate.
Now, with 600mg a day, he has nearly no more pain to the prostate but he has these pain to neck and lower back, I don't know if it is a "kidney pain"...
I didn't understand what you meant by "permanent damage to the kidneys"?
Does Neurontin damage the kidneys?
Good luck for the future.

In response to the question about whether Neurontin damages the kidneys: this is one of my strong concerns, as I have a lifetime of problems of the urinary system. Since pain of the lower back over the kidney is one of the prominent symptoms of kidney damage/infection (and I have only had it since taking Neurontin), I don't want to take any chances. I'd advise that you -- or your husband -- check into this. Best wishes, JanK

I would also like to know of documented use of liver and (especially) kidney problems with Neurontin, as I am having side effects that seem to indicate great wear-and-tear on the kidneys. JanK

Ref, Swelling of feet and legs: Try to think back about whether the swelling happened before or after you went off the Neurontin, as this drug acts like a strong diuretic, and if your kidneys are not working correctly (your doctor) can check this for you) one of the first places fluid collects is in the lower extremities. If the swelling started two weeks ago it could be a 'rebound effect' from going off the drug.

Also, diabetes and congestive heart failure have symptoms of swelling in the feet and lower legs. It depends on what condition you were taking the Neurontin for; obviously it's a bad symptom, but probably is only peripherally connected to Neurontin. Gapentin, the primary ingredient of N. is often given to people who are on kidney dialysis, since that is the primary effect it has on one's body.

JanK, Neurontin taker, and a person who has researched this drug extensively for physical effects.

I have been taking 300mg of neurontin three times per day for the past 12 months due to a back injury and finally major back surgery in September 2002. I have many of the same symptoms: light headedness, swelling in knees, ankles, feet, short-term memory loss, lack of concentration and worst of all 'restless leg syndrome', severe muscle cramps from my thighs to my toes in both legs. I am really becoming concerned about these symptoms and I'm wondering if I should go off of neurontin for good. I have begun experiencing pain over my kidneys of late and I'm concerned that I may be experiencing the beginnings of kidney failure.
I would appreciate any comments.

Answer to 'Requesting Comments':
Yes, those are all side-effects that I (and others) have noticed. Have you talked to your doctor about it? The main question here is, have you become addicted to the stuff, or could you taper off and do with something else, or with smaller doses?

I asked my pharmacist to fill the prescription with 100mg capsules instead of 300 mg ones, and have been tapering myself off for the last 6 or so months. So, I only take as much as my pain and discomfort seem to require.

Much of the symptoms you describe have abated -- and I had a test to show kidney functioning (which came out 'normal'), so the pain over the kidneys problem is not so frightening now.

However, the BEST thing to do is ask your doctor to help you addrress this problem together with you -- and if he/she won't then you need another doctor.
Hope this helps, JanK

The only FDA-approved use for Neuronin is for muscle-spasm connected pain, with epilepsy. However I have noticed that most of the people who have responded to this side-effect registry take it for other reasons. I -- for example -- use it for fibromyalgia, a type of arthritis characterized by (in my case) whole body aching, something like a bad case of flu. It is similar to Dilantin, and nobody knows exactly HOW it works, except that it helps the kidneys remove Gapentin from the urine, and for that reason is often given to kidney-dialysis patients.
It has its own list of side-effects, and reading these postings will educate you about a lot of them, and it SEEMS to be as dependence-producing as Vicodin and related products, but not officially addictive.
I am concerned that you would be taking Neurontin in addition to Vicodin. Does the amount of Vocodin you now take not manage your pain?
If It were me in this position I would much rather be taking Neurontin than Vicodin, because of the addiction problem, and this might be your doctor's attempt to wean you off of Vicodin, especially if you are needing increasing amounts of Vicodin, a baaaaad sign.
TALK TO YOUR DOCTOR about this! Not a lot is known about the interactions of these two drugs, and in my mind could be possibly dangerous. The Neurontin seems to increase the effect of other medicines, especially the ones in Vocodin. Depending on your particular situation, taking Vicodin and Neurontin at the same time could be good, or life-threatening. Is your doctor going to mnonitor you closely, or are you going to be a guiney-pig? At the least monitor youself and the effects on your body for adding Neurontin -- and insist on starting with the smallest dose of Neurontin possible. I commend you for wanting to find out more before you take what sounds like an unexplained drug.
JanK, Neurontin patient, grandmother, retired Master's level alcohol and drug abuse counselor, First Aid Certified counselor, and elementary education teacher.

Neurontin did to me much of everything mentioned above. I got the swelling of the lower extremities, which didn't go away after I stopped the drug. I still swell there, and am about to be evaluated for kidney function to see if my kidneys have been damaged. I've been off the Neurontin for over a year. I went to Topamax, which works just as well without any side effects for me.

(By the way, I took it for neurogenic pain.)

One thing I've not seen mentioned though, is rotting and brittle teeth. Mine went really bad. I had to have several caps replaced, and several caps put on, and also had to have three different root canals duing my Neurontin use.

PS: Question for "Guest" ref testing: What are we having blood tested FOR every six months "if taking seizure medicine or tylenol"? Personally I stay away frpm Tylenol because it seems to ruins the kidneys? (I want to know what to tell my doctor she is looking for --) Jan S. Kauffman

i have been taking neurontin for about 3 or 4 years now. i am also on several other meds. verapamil 120mg bid,cytomel 25mg 1/2 tab qd,valium 5 mg 1 tab tid,zoloft 100mg 2 tab qd, levoxyl 0.125mg qd and imertrex 100mg at start of migraine plus more later if needed(which i won't do) recently i have been having a burning tounge. my dr. says it could be one of my meds.'turning against me'. i also urinate all of the time. i can't go anywhere! i also can't urinate if i take almost any psytrophic drugs because i can't release it from my bladder. i have been schizo-affective for many years now. only within the last year have the meds.started to bother me. could the neurontin be the cause of my burning tounge and frequent urination? i already know which meds. that i use to be on that caused the inability to release urine from my bladder. i don't take those anymore? any help would be appreciated. my doctors are stumped. oh yes , my kidneys and bladder are ok i had them checked out by specialist. sorry. my neurontin is 300mg qd.