Does Neurontin lead to ALS?

[MtPockets]

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, neurontin, is Pfizer and they do not know or have any idea how the drug works?????? They said that from their own website. You got to be kidding me.
God Bless,
Big AL:cry:

[rbtro]

Big Al

I don't know if it causes ALS, but I do know that it is prescribed for a lot of Spinal Chord Injury pain. I have been on Gabapentin(generic neurontin) since January. I am doing only 600mg a day. I have read on the SCI forum that some of them use up to 5600mg which is the most the body can absorb. They seem to adjust the amount based on their pain. If it causes ALS I expect a lot of these people to join our club. I have always questioned the side effects listed for most drugs. It seems that the drug companies list everything that is mentioned in the study group as possible side effects. I believe this is driven by litigation. I have several pharmacuticals now that the side effects are the same as the symptoms requiring me to take them. Go figure.


God bless,

Rich

[MtPockets]

It just makes me wonder if they have no idea how it works and it interrupts nerve signals to the brain???????? What damage might it be doing to the nerves if any.

God Bless
Big AL

[TRACY22]

1 yr after pronounced ALS i got the docs to try to fix my back. after the operation the pressure on the nerves was kind of ok for 3 months. then they started with different pain meds and shots because i can not take another back surgery..

not until i got on gabapetine did life become ok,(not great, but bearable). i like the med and combine it with Advil. it does take 1-2 weeks to get use to the different strengths. i just went from 300 to 400mg, 3x a day.

[MtPockets]

Glad it is helping you. I was at 2500mg per day , which I feel was probably too high, but I was also under intense pain. I just worry about all the side effects of all the meds we take and what the long term effect will be to us. Good luck.
God Bless
Big AL
:)

[Nala]

Hi Everyone!!

I am not sure if this drug causes ALS but I know it has alot of bad side effects that worried my brothers Doctor.. so he took him off the neurontin totally (he has schitzophrenia) he and I both could not use Neurontin (I have seizures) I was allergic to Neurontin and had a terrible time with it.

Nala

[MtPockets]

That's the problem with all these wonder drugs, terrible side effects for some people. I also had trouble with my eyesight while on Neurontin, had to change eyeglass prescription about every year. Since I have been off it my eye sight has stabilized and have not had to get different prescription for over 4 years now. Don't know if that was a side effect also but seems strange that eyes stopped getting worse when I stopped the drug.

God Bless
Big AL

[Nala]

Hi Big AL,

I am wondering if theres any LONG TIME after effects of this drug.. Davids liver is bad and will probably end up on dialisis within the next few years... and they say its from the nourontin he also has problems with loss of memory.. I am not totally convinced it was the nourontin but it could very well be since it all started after he was put on that.

God Bless
Nala

[MtPockets]

Has David's doctor been doing Liver blood tests? My docs here run a complete liver and blood screen every 3 months to make sure nothing I am taking is having bad effects on the body. Lord knows I have enough trouble already without my liver giving out. My docs have been doing that for about the past 5 years so they have a good reference base of where I am.

God Bless
Big AL

[Nala]

David gets checked regularly his liver,his stomache,david also has memory loss terribly and once every so often he would have a seizure.. they also say nourontin can cause seizures if not level..could be I really dont know.. anyway the liver is checked on david every few months as like yourself.. and the doctors say he will eventually have trouble as well as kidney, we can only hope and pray that this will never happen

Hugs
Nala

[Armenzielle]

I am on gabapentin for 2 months now,at the biggining it seems to help but the pain came back and with what i am reading it scares me to continue.

[Armenzielle]

I would like to know if anyone are like me goig to period of excrutiating pain and then it gets better sometimes almost ok....And it'start again?

[Ran]

Hi, I was dx in may 2001 and get this 'come and go' pain since 2004. I take 200mg tegretol in the morning and 400mg tegretol, with 200mg neurontin at night for the past 18 months. Also do passive stretches 2x / day, and stand for at least 30min a day. Pain much less.
Best wishes.:)

[CindyM]

Hi Ran- glad you found somethign for the pain. Nice to see new members pitching in with tips. :-D cindy

[cheryllynn]

I just read your thread about ALS & Neurotin. It's so funny because I was just diagnosed a few wks ago with ALS. I mentioned to my daughter, who is in her last year of Nursing, that I couldn't help but think about Neurotin and this happening to me, then I read what you wrote...ironic????? will talk more later, it's hard for me to type too much at a time

Cheryllynn

[MtPockets]

I'm glad you found it Cheryllyn. I really believe there is a correlation between the two.

It really bothers me that a Pharmaceutical company would put on the market a medicine that they have no idea HOW IT WORKS. DUH! Especially one that effects the motor nerves. :roll:

But there are many of them out there today. A good example is aspirin. No one knows how it works, but it does?

I know what you mean about typing. I am having trouble with my left hand with weakness, pain, and spasms. It's hard to write by hand anymore due to the shaking.
I'll hang in there the best I can, I hope you do too. Looking forward to reading your posts.

[wandabates]

I am on gabapentin for 2 months now,at the biggining it seems to help but the pain came back and with what i am reading it scares me to continue.

Have you ever heard of Lyrica?My neurologist put me on it for nerve damage,after doing an emg and nerve velocisty test,and it seems to help my back pain,from what i hear it is concidered a narcotic and but he has me on 50mg 3 times a day.I too have taken neurontin in the past and now have signs of als,mine started with a swallowing difficulty,now it is getting progressively worse,cough every time i eat and no gag reflex,babinski sign positive,hyperreflexia,weakness in my arms and legs,headaches all the time.I wonder if the neurontin caused any of my problems.There is no way for any of these drug companies to know the long time efect of these drugs they are marketing because they do not do long enough studies on them.Iwas also around black mold where i did work for 3 years and i wonder if that might be why i am having my problems ,it started about 4 or 5 months into me starting there.Probably will not ever find out,but good luck too you.

[kylisa]

I don't know if this drug causes ALS. I do know that my mother has never taken this or any other drug, other than an occassional Advil or a rare antibiotic. She has been recently diagnosed with full blown ALS. Upper, Lower, and Bulbar regions are all affected.
So, her case is not in any way connected to drugs of any kind.

[Carolrose]

Hello Everybody.. I'm new, and found this forum when I did a search on "Neurontin and ALS". I took Neurontin, 300 mg 3 times a day, for over 4 years for Restless Leg Syndrome, and wondered if there could be some correlation between the drug and the disease. It started with leg weakness in early 2005, and I was diagnosed in June of 2006.

I was told I have a "rare slow moving variant" of ALS, since I'm still able to walk around with a rollator and crutches, and have no upper body symptoms, after 3 years. They can't explain my symptoms otherwise, though I've also had Lyme Disease and currently have herniated discs.

I stopped the Neurontin about the same time the symptoms began.. It should be easy to do a study on how many patients with ALS have taken Neurontin, but I doubt it will happen. The drug companies would not want to be held accountable.

Carolrose

[MtPockets]

I am the one who started this thread. This is the information I have regarding Neurontin.

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the Neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, Neurontin, is Pfizer and they do not know or have any idea how the drug works?????? They said that from their own website. You got to be kidding me.
God Bless,
Big AL:cry: