Neurontin

[Guest guest]

I was just put on Neurontin but not for PA. I have also small fiber Neuropathy

so I take 50mgs daily of Topamax and now the three pills of the Neurontin a day

for the Neuropathy. I get tremors and these meds stop the tremors. I also take

50 mgs. daily of VIOXX for the PA. The Neurontin makes me incredibly sleepy.

relizabethb@...

http://site.quickbooks.com/sites/98/03/2e/rebrown15541/

http://albums.photopoint.com/j/AlbumList?u=52571 & f=0

[ ] Re: Neurontin

Hi - I take Neurontin for pain in my feet - I can't walk for very

long - maybe 30 minutes - Dr said it was because I drank a lot when I

was in my 20's. It has stopped the pain - I only take one of the

three per day because that works but go ahead and get the

prescription for 3 per day so if I need them I have them.

lj

[Guest guest]

That's interesting, because the Doctor told me it didn't have as many side

effects as the Topamax. And I'm just biding time until the MTX starts. I feel

so much better but I hate taking so much medicine. These pills make me so

sleepy. The doc told me it would get rid of charley horses, hot feelings, pins

and needles and numbness and pain. I have noticed some difference but at times,

everything comes back. (Sometimes I feel like an experiment:))

relizabethb@...

http://site.quickbooks.com/sites/98/03/2e/rebrown15541/

http://albums.photopoint.com/j/AlbumList?u=52571 & f=0

Re: [ ] Neurontin

I am being successfully treated with neurontin for neuropathy contributing to

TMJ, myofacial pain and eye pain/migraine--all on the right side of my face and

head. I also experience a disproportionate amount of pain in my feet compared

to rest of my body. My neurologist had my feet tested for neuropathy. He

suspected it was not the cause of my pain because I was already on the neurontin

which is often effective in the treatment of pain in the feet (I.a. diabetics).

Sure enough tests revealed no neuropathy in feet so all of pain is attributed to

arthritis and I have been referred to orthopedist who's specialty is feet for

evaluation for possible surgical intervention.

I remember neurontin was discussed extensively by this group sometime during

past year. Quite a few of us have been prescribed neurontin at some point, but

my memory is that the side effects for some have made its use prohibitive.

[Guest guest]

Hi, I've been takem klonopin, similar to neurontin in its action.

Klonopin has done wonders for me. Just wish i'd gone on it years

ago. I've suffered some brain damage since thjen. I have been

thinking of trying neurotin or combining the two for day and night

time doses. If you decide to try klonopin, let me know how it works

for you and how it differs from neurotin. I'd really appreciate it.

I'll do the same for neurotin.

maybe you've already viewd these websites by carol...

http://virtualhometown.com/dfwcfids/medical/klonopin.html

http://virtualhometown.com/dfwcfids/medical/cheney.html

email me when you get the chance...

(natureabor1@...)

> hi neurontin users,

>

> looking for yr opinion:

> if i am finally up to 1100 mg of neurontin, after slowly building

up over

> the past 2 months, and i still don't feel any effects from it,

should i

> just realize it is not helpful, or should i keep going up on the

dose?

>

> rivka

[Guest guest]

Many people do not experience benifits with Neurontin until they get

up to a considerably higher dose. If my memory serves me, it was

around 3200mg/day in a divided dose.

I took high dose Neurontin for several months. It helped at first,

but then I began to deteriorate. It ended up hurting me. This does

not say that it will do the same to you. I think my case is somewhat

unique. Others have claimed high dose Neurontin as very useful.

There is a form dedicated to Neurontin , with many CFS/FM people on

it. I don't have the link, but it is through Maelstrom Forums of St.

's University, I believe.

Best,

Zippy

--------------------------------------------------------------

>

> > hi neurontin users,

> >

> > looking for yr opinion:

> > if i am finally up to 1100 mg of neurontin, after slowly building

> up over

> > the past 2 months, and i still don't feel any effects from it,

> should i

> > just realize it is not helpful, or should i keep going up on the

> dose?

> >

> > rivka

[Guest guest]

What about klonopin, maybe it's stronger? Anyone try both?

> > > hi neurontin users,

> > >

> > > looking for yr opinion:

> > > if i am finally up to 1100 mg of neurontin, after slowly

building

> > up over

> > > the past 2 months, and i still don't feel any effects from it,

> > should i

> > > just realize it is not helpful, or should i keep going up on

the

> > dose?

> > >

> > > rivka

[Guest guest]

I take both Neurontin (1200 mg, 4 times a day for total of 4800 mg/day), and

Klonopin also. Klonopin helps me sleep, but does not help my neuropathic

pain. I have a coagulation defect in an enzyme which is needed for

producing/maintaining the myelin sheath which protects the nerves. The only

med which has helped that pain is Neurontin. I have recently been diagnosed

with RSD also, and the diagnosing doctor (my new PCP) wants me to take

Tegretol. It will not interfere with the Klonopin or Neurontin, and has been

reluctantly ok'ed by Dr. Cheney, but I have not taken it yet. Just hate to

add to the mix of meds I'm already on, but getting close.

There is indeed a list for Neurontin users. It is not specifically for PWC's

only, but there are many PWC's on it. To join write to

Neurontin-L-Request@... and Marilyn, the listowner will

subscribe you. Hope this helps.

Donna in NC

Re: neurontin

> What about klonopin, maybe it's stronger? Anyone try both?

>

[Guest guest]

Donna,

How did you find out about the coagulation defect in the enzyme? I suffered

from disabling neuropathic pain for 16 years till 1999 when I had a stroke and

the pain went away. Weird. I am fully

recovered from the stroke but suffered terribly because the doctors didn't

believe that i had the pain until I found a man who manages cancer pain who

helped me with heavy narcotics. I would

like to share the diagnostics with him.

Thank you,

Beck Spelce

Donna Pruitt wrote:

> I take both Neurontin (1200 mg, 4 times a day for total of 4800 mg/day), and

> Klonopin also. Klonopin helps me sleep, but does not help my neuropathic

> pain. I have a coagulation defect in an enzyme which is needed for

> producing/maintaining the myelin sheath which protects the nerves. The only

> med which has helped that pain is Neurontin. I have recently been diagnosed

> with RSD also, and the diagnosing doctor (my new PCP) wants me to take

> Tegretol. It will not interfere with the Klonopin or Neurontin, and has been

> reluctantly ok'ed by Dr. Cheney, but I have not taken it yet. Just hate to

> add to the mix of meds I'm already on, but getting close.

>

> There is indeed a list for Neurontin users. It is not specifically for PWC's

> only, but there are many PWC's on it. To join write to

> Neurontin-L-Request@... and Marilyn, the listowner will

> subscribe you. Hope this helps.

> Donna in NC

>

> Re: neurontin

>

> > What about klonopin, maybe it's stronger? Anyone try both?

> >

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Beck,

I had a very extensive body of coagulation studies done at Ball State

Medical through their thrombosis unit prior to having oral surgery done. The

studies were ordered by the oral surgeon, who used to be chief researcher

for Dr. Jerry Bouquot, the top dental pathologist in this country. They have

found a wide range of coagulation defects in folks with NICO pain, and my

particular defect involves all nerves potentially. HEMEX does not offer all

of the tests that were done, and a few of them have to be done in person, as

they are timed tests. This particular panel, called the Thromb 15 is also

done at Jewish Hospital in Cincinnati. I you want more info let me know -

but I will need a day or two to dig up the info. If you want the particular

tests, I can send them backchannel, as an attachment. My arms get too tired

typing too much, and spell checker isn't of much help in that department.

Donna in NC

Re: Re: neurontin

> Donna,

>

> How did you find out about the coagulation defect in the enzyme? I

suffered from disabling neuropathic pain for 16 years till 1999 when I had a

stroke and the pain went away. Weird. I am fully recovered from the

stroke but suffered terribly because the doctors didn't believe that i had

the pain until I found a man who manages cancer pain who helped me with

heavy narcotics. I would like to share the diagnostics with him.

>

> Thank you,

>

> Beck Spelce

>

> Donna Pruitt wrote:

>

> > I take both Neurontin (1200 mg, 4 times a day for total of 4800 mg/day),

and Klonopin also. Klonopin helps me sleep, but does not help my neuropathic

pain. I have a coagulation defect in an enzyme which is needed for

producing/maintaining the myelin sheath which protects the nerves. The only

med which has helped that pain is Neurontin. I have recently been diagnosed

with RSD also, and the diagnosing doctor (my new PCP) wants me to take

Tegretol. It will not interfere with the Klonopin or Neurontin, and has been

reluctantly ok'ed by Dr. Cheney, but I have not taken it yet.

[Guest guest]

In a message dated 7/26/02 10:12:37 AM Central Daylight Time,

donnap@... writes:

<< They have

found a wide range of coagulation defects in folks with NICO pain, and my

particular defect involves all nerves potentially. HEMEX does not offer all

of the tests that were done, and a few of them have to be done in person, as

they are timed tests. This particular panel, called the Thromb 15 is also

done at Jewish Hospital in Cincinnati. I you want more info let me know -

but I will need a day or two to dig up the info. If you want the particular

tests, I can send them backchannel, as an attachment. My arms get too tired

typing too much, and spell checker isn't of much help in that department.

Donna in NC >>

Hi Donna,

Yes, I would like more information. What does NICO pain mean? I have nerve

damage in my legs, specifically the peroneal nerve, and it is very hard to

treat. Without the Neurontin, I'm basically not able to function. I take

Hydrocodone/ASAP, Duragesic Patch, Celebrex, Celexa, Synthroid, Elavil and

Neurontin. It seems, with the exception of the Synthroid, that these drugs

work as a team... if I run out of one, the others don't seem to work as well.

Because of the high volume of email I get, and the fact that I haven'tbeen

doing very well lately, I haven't been able to keep up with this thread...

sorry about that, as these questions that I ask may have already been

answered.

Shelle in MI

GBS in 99

[Guest guest]

<PRE>ok, that's a real person saying it now. i heard the dr saying it, but

probably because a drug company rep told them that. i will try it soon.

thanks for the response. kathy in il

[Guest guest]

I had those sx at 300 mgs so went off and later began again. Only 100 at night,

then slowly added...100 in day, then 3rd dose of 100. Then 200 at night, then

200 in day then a 3rd dose of 200. So up only 100 at a time. Now I take 200

every 4 hours. Do not have drunk sx. Do not know if it made balance or memory

worse, (maybe) since i always had those. Other cognition is definitely improved

(most of the time), peaked at 2 years just as I have heard it would.

Other meds....Florinef, levoxyl,aspirin,ocassionally very low klonopin,valtrex,

others rarely.

Katrina

> For those who are taking neurontin:

> How long did it take before the side effects subsided (such as feeling dazed

> and drugged and out of it), what dose were you taking, and what other meds

> did you take with the neurontin?

>

[Guest guest]

just wanted to add that neurontin is now available as a liquid, so you can start

very slowly and work your way up. from what I have read, the more slowly you

increase your dose (and give your body a chance to get used to the drug), the

lower the incidence of side effects.

[Guest guest]

Peggy,

I take 4800 mg/day of Neurontin, divided into 4 doses. The trick is to

increase slowly, drink lots of water, and it's also a big plus in

eliminating side effects to take it with protein. Doesn't say anything about

protein in the literature, but the listowner of the Neurontin list, a former

RN, has found through trial and error, that you can virtually eliminate the

drugged and dazed sensation. I have found that particularly true for me. The

only dose I do not eat protein with is my bedtime dose, when I want a little

extra help with sleep. However, I have been on N for a couple of years now,

and don't feel any of the side effects except perhaps some added grogginess

if I don't take protein with my first morning dose. But then I don't wake up

well, so even that is hard to call.

Donna in NC

Neurontin

> For those who are taking neurontin: How long did it take before the side

effects subsided (such as feeling dazed and drugged and out of it), what

dose were you taking, and what other meds did you take with the neurontin?

I took neurontin at one point but don't think I stayed on it long enough. I

didn't realize it took a long time for some CFIDS patients to have fewer

side effects, and was so out of it and dizzy and banging into walls when I

took it, so I didn't stay on all that long. I am considering trying it

again.

>

> Peggy

>

[Guest guest]

Hi Donna, and All,

I would like to know how neurontin has

helped

people with CFS / FM.

Mike

[Guest guest]

Hello all,

Donna is right in stating that taking some protein with Neurontin

nullifies the side effects.

There is one more requirement to avoiding side effects--taking the drug

every six hours.

Steve Du Pre

Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html

" By words the mind is winged. " Aristophanes

[Guest guest]

Hello all,

Donna is right in stating that taking some protein with Neurontin

nullifies the side effects.

There is one more requirement to avoiding side effects--taking the drug

every six hours.

Steve Du Pre

Webpage: http://www.angelfire.com/jazz/isaiah40soaringeagle/index.html

" By words the mind is winged. " Aristophanes

[Guest guest]

I am taking neurontin for " restless leg syndrome " - I thought it was being

some help until I heard a recent report on NPR. Neurontin is authorized as

an anticonvulsant for epilepsy. The epilepsy market is fixed in size at

about 800,000 sufferers in the US. Pfizer has about 4 years left on the

neurontin patent which is too short a time to re-qualify it for another

use through the FDA. Pfizer has apparently been having a marketing

campaign to persuade doctors to use it " off-label " . Pfizer's salesmen only

need a little evidence to persuade some of the doctors to prescribe it.

The 'evidence' is not rigorous testing of the type needed for an FDA

approval.

Neurontin seems to be popping up all over as the answer for any

neurological problem. I don't know what proof there is that it works in

any of these situations. The doctor who prescribed neurontin for me is a

leading neurologist and I accepted Neurontin without investigating it. Now

I am going to find out what evidence there is for this particular use - if

any!

On Tuesday, November 12, 2002, at 02:11 AM, Ronnie wrote:

> Hi All....Is anyone out there taking Neurontin with Enbrel. I am on

> Enbrel and Klonopin. My Pshrink has made a suggestion that I add

> Neurontin for generalized anxiety. I wouldn't think twice about it

> except Enbrel is so new. Also I had a psychotic reaction to Prednesone a

> while back so I'm very careful about psychoactive drugs nowadays. I'm

> not enamored with the idea of being a walking pharmacopoeia either. I

> always take the less is better approach. But if it works, what the heck.

> Any feedback would be appreciated. R.E.

>

>

[Guest guest]

Once a drug is approved by the FDA, unless there are definite restrictions

(like Accutane) any licensed MD can prescribe a drug for any reason s/he

sees fit. Neurontin (gabapentin) is an anti-seizure med and it works by

interrupting and changing the way impulses travel along the nervous

membrane, smooths it out, slows it down, coordinates it. Seizure activity

is uncontrolled or inappropriate nerve transmission so this drug can reduce

that kind of activity and the number of seizures. Pain travels on the same

nerves by the same kind of impulses so bright thinkers wondered if using

this medication would interfere with the transmission of " useless " pain from

irritated nerves or hyperactive nerves and it definitely does seem to work.

Drugs are tested in clinical trials for specific controlled purposes. Once

approved and real patients start using the drugs, other side effects are

noted, not all of them bad. These anecdotal reports make it into medical

journals where other docs read that hmmm, my chronic pain patients who have

seizures don't have as much pain since they've started taking neurontin, or

my depressed pts with seizures are less depressed on neurontin. These then

become unlabeled uses for the drugs. If drug companies want the drugs to be

prescribed for other uses, if they want to promote them for other uses, they

have to go through clinical trials to prove it and get FDA approval.

Insurance companies usually require that drugs be used for labeled purposes

only, which is why so many of us are diagnosed with RA as far as the

insurance companies are concerned.

So whenever a doc prescribes a drug, ask why, what s/he expects it to do and

then ask a pharmacist or look it up on your own and find out about the

medication you're taking. Ask about unlabeled uses. Report back to your

doctor when things are better, worse or different. That's how we learn what

works and what doesn't. Viagra was originally tested for hypertension but

the side effects were more interesting!

[Moderator's note: Dilantin has long been used by epilepsy sufferers to control

seizures. I wonder if Dilantin would have an effect similar to neurontin as a

sedative and pain-killer? Ron]

[Guest guest]

I take neurontin for my neuropathy. Not on Enbrel, but am on Remicade and MTX,

Indocin a

[Guest guest]

That's an interesting point but I was more curious, if you don't mind, on

details. Such as much are you taking? Did you have to ramp up with

progressively larger doses? Do you have any side effects? Does it make you

tired? Can you have an occasional drink with it? Any comment would be

appreciated. Thanks Ronnie E.

Re: [ ] Neurontin

> I am taking neurontin for " restless leg syndrome " - I thought it was being

> some help until I heard a recent report on NPR. Neurontin is authorized as

> an anticonvulsant for epilepsy. The epilepsy market is fixed in size at

> about 800,000 sufferers in the US. Pfizer has about 4 years left on the

> neurontin patent which is too short a time to re-qualify it for another

> use through the FDA. Pfizer has apparently been having a marketing

> campaign to persuade doctors to use it " off-label " . Pfizer's salesmen only

> need a little evidence to persuade some of the doctors to prescribe it.

> The 'evidence' is not rigorous testing of the type needed for an FDA

> approval.

>

> Neurontin seems to be popping up all over as the answer for any

> neurological problem. I don't know what proof there is that it works in

> any of these situations. The doctor who prescribed neurontin for me is a

> leading neurologist and I accepted Neurontin without investigating it. Now

> I am going to find out what evidence there is for this particular use - if

> any!

>

>

>

> On Tuesday, November 12, 2002, at 02:11 AM, Ronnie wrote:

>

> > Hi All....Is anyone out there taking Neurontin with Enbrel. I am on

> > Enbrel and Klonopin. My Pshrink has made a suggestion that I add

> > Neurontin for generalized anxiety. I wouldn't think twice about it

> > except Enbrel is so new. Also I had a psychotic reaction to Prednesone

a

> > while back so I'm very careful about psychoactive drugs nowadays. I'm

> > not enamored with the idea of being a walking pharmacopoeia either. I

> > always take the less is better approach. But if it works, what the

heck.

> > Any feedback would be appreciated. R.E.

> >

> >

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

Your message seems incomplete. I would seriously be interested in any

comment on the dosage and side effects you experience on Neurontin. Thanks

Ronnie E.

Re: [ ] Neurontin

> I take neurontin for my neuropathy. Not on Enbrel, but am on Remicade and

MTX, Indocin a

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

I take 900 mg daily with absolutely no side effects. I saved me from endless

sleepless nights due to the extreme diabetic neuropathy in my feet. The pain

and horrible tingling was as bad as any of the PA pain. Now, my feet are numb,

but without the pain.

Re: [ ] Neurontin

> I take neurontin for my neuropathy. Not on Enbrel, but am on Remicade and

MTX, Indocin a

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

Ron, after the things I have learned this week, I have stopped taking

Neurontin. The drug seems to have little effect in its latest uses for

problems such as ours. I have been trying to get our moderators to post

the following for a week now and they seem to be playing censor rather

than moderator.

On Saturday, November 16, 2002, at 11:39 PM, Ronnie wrote:

> That's an interesting point but I was more curious, if you don't mind, on

> details. Such as much are you taking? Did you have to ramp up with

> progressively larger doses? Do you have any side effects? Does it make

> you

> tired? Can you have an occasional drink with it? Any comment would be

> appreciated. Thanks Ronnie E.

> Re: [ ] Neurontin

>

>

>> I am taking neurontin for " restless leg syndrome " - I thought it was

>> being

>> some help until I heard a recent report on NPR. Neurontin is authorized

>> as

>> an anticonvulsant for epilepsy. The epilepsy market is fixed in size at

>> about 800,000 sufferers in the US. Pfizer has about 4 years left on the

>> neurontin patent which is too short a time to re-qualify it for another

>> use through the FDA. Pfizer has apparently been having a marketing

>> campaign to persuade doctors to use it " off-label " . Pfizer's salesmen

>> only

>> need a little evidence to persuade some of the doctors to prescribe it.

>> The 'evidence' is not rigorous testing of the type needed for an FDA

>> approval.

>>

>> Neurontin seems to be popping up all over as the answer for any

>> neurological problem. I don't know what proof there is that it works in

>> any of these situations. The doctor who prescribed neurontin for me is a

>> leading neurologist and I accepted Neurontin without investigating it.

>> Now

>> I am going to find out what evidence there is for this particular use -

>> if

>> any!

>>

>>

>>

>> On Tuesday, November 12, 2002, at 02:11 AM, Ronnie wrote:

>>

>>> Hi All....Is anyone out there taking Neurontin with Enbrel. I am on

>>> Enbrel and Klonopin. My Pshrink has made a suggestion that I add

>>> Neurontin for generalized anxiety. I wouldn't think twice about it

>>> except Enbrel is so new. Also I had a psychotic reaction to Prednesone

> a

>>> while back so I'm very careful about psychoactive drugs nowadays. I'm

>>> not enamored with the idea of being a walking pharmacopoeia either. I

>>> always take the less is better approach. But if it works, what the

> heck.

>>> Any feedback would be appreciated. R.E.

>>>

>>>

>>

>>

>>

>> Please visit our Psoriatic Arthritis Group's informational web page at:

>> http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@...).

>>

>> In August 2001 list member Jack aka(Cornishpro@...) began

>> to

> conduct extensive research which he publishes as the Psoriatic Arthritic

> Research Newsletter monthly in our emails and digest format. Many thanks

> to

> Jack. Back issues of the newsletter are stored on our PA webpage.

>>

>> Also remember that the list archives comprise a tremendous amount of

> information (Over two years of messages and answers).Feel free to browse

> them at your convenience.

>>

>> Let's hear from some of you lurkers out there! If you have a comment or

> question chances are there is a person who has been around a while who can

> help you out with an educated guess for an answer. If not we can at least

> steer you in the right direction with a good website to go to for the

> answers.

>>

>> Blessings and Peace,

>>

>> Atwood-Stack, Founder

>> Alan , Web & List Editor

>> Jack , Newsletter Editor

>> Pat Bias, List Editor

>> Ron Dotson, List Editor

>> and many others who help moderate (thank you!)

>>

>>

>>

[Guest guest]

Ron, after the things I have learned this week, I have stopped taking

Neurontin. The drug seems to have little effect in its latest uses for

problems such as ours. I have been trying to get our moderators to post

the following for a week now and they seem to be playing censor rather

than moderator.

I have stopped taking Neurontin recently because of information that came

my way and I think other PA sufferers should be aware of what is going on.

Several sufferers on this board, including me, have been prescribed

Neurontin. Like me, they may have been given the medication in the hope of

helping some neurological condition such as neuropathic pain, restless leg

syndrome or depression. If the Federal Prosecutor in Boston is right,

these uses of Neurontin owe more to the imagination of salesmen than the

skill of Doctors!

The Parke- subsidiary of Pfizer is on federal trial in Boston. A

whistleblower (a former Parke- salesman) brought about this suit

with the information he supplied the FDA.

Neurontin is qualified as an adjunct anticonvulsant for epilepsy. The

market for epilepsy is limited. The drug's patent has only a few years

left to run; less time than it takes to get FDA approval for a new use of

the drug. Neurontin's manufacturer is accused of illegal marketing and the

endangerment of patients with a strategy that was used to increase sales

of the drug. Parke-' marketing department allegedly drew up a list

of theoretical uses for Neurontin, cross-checked that list with market

size and then ordered 'quickie' clinical studies on the most profitable

uses. Armed with some preliminary data, allegedly, the Parke-

salesmen set about pushing the drug for new uses.

Off-label use by doctors is legal and leads to a lot of new uses of drugs.

The anecdotal jungle drums of the medical profession is a good mechanism

that leads to many new applications. It is not legal, however, for drug

companies to push new uses of their drugs without thorough trials approved

by the FDA. The perversion of the doctors' jungle drums into a marketing

tool is very wrong!! This is precisely what the Federal is accusing

Parke- of doing.

You can listen on Realaudio to the latest report from NPR at

http://www.npr.org/ramfiles/wesat/20021102.wesat.15.ram

http://www.npr.org/ramfiles/atc/20021029.atc.05.ram

or go to www.npr.org and search neurontin to get all the reports.

You can find many of the Parke- 'quickie' studies on the web. These

were allegedly used to get some " evidence " to market Neurontin to the

medical profession. Many of these studies showed that only a few patients

were helped by Neurontin and the effectiveness seems questionable to me.

For example, in one of the quickie studies (neuropathy pain) 1 in 4 of the

neurontin patients were relieved of pain compared with 1 in 6 of those on

placebo - Neurontin is hardly a wonder drug!! I guess that helping a few

patients is enough evidence for some doctors in their desperation to help

patients!!

for this particular example see

http://www.pslgroup.com/dg/D6AC6.htm

On Saturday, November 16, 2002, at 11:39 PM, Ronnie wrote:

> That's an interesting point but I was more curious, if you don't mind, on

> details. Such as much are you taking? Did you have to ramp up with

> progressively larger doses? Do you have any side effects? Does it make

> you

> tired? Can you have an occasional drink with it? Any comment would be

> appreciated. Thanks Ronnie E.

> Re: [ ] Neurontin

>

>

>> I am taking neurontin for " restless leg syndrome " - I thought it was

>> being

>> some help until I heard a recent report on NPR. Neurontin is authorized

>> as

>> an anticonvulsant for epilepsy. The epilepsy market is fixed in size at

>> about 800,000 sufferers in the US. Pfizer has about 4 years left on the

>> neurontin patent which is too short a time to re-qualify it for another

>> use through the FDA. Pfizer has apparently been having a marketing

>> campaign to persuade doctors to use it " off-label " . Pfizer's salesmen

>> only

>> need a little evidence to persuade some of the doctors to prescribe it.

>> The 'evidence' is not rigorous testing of the type needed for an FDA

>> approval.

>>

>> Neurontin seems to be popping up all over as the answer for any

>> neurological problem. I don't know what proof there is that it works in

>> any of these situations. The doctor who prescribed neurontin for me is a

>> leading neurologist and I accepted Neurontin without investigating it.

>> Now

>> I am going to find out what evidence there is for this particular use -

>> if

>> any!

>>

>>

>>

>> On Tuesday, November 12, 2002, at 02:11 AM, Ronnie wrote:

>>

>>> Hi All....Is anyone out there taking Neurontin with Enbrel. I am on

>>> Enbrel and Klonopin. My Pshrink has made a suggestion that I add

>>> Neurontin for generalized anxiety. I wouldn't think twice about it

>>> except Enbrel is so new. Also I had a psychotic reaction to Prednesone

> a

>>> while back so I'm very careful about psychoactive drugs nowadays. I'm

>>> not enamored with the idea of being a walking pharmacopoeia either. I

>>> always take the less is better approach. But if it works, what the

> heck.

>>> Any feedback would be appreciated. R.E.

>>>

>>>

>>

>>

>>

>> Please visit our Psoriatic Arthritis Group's informational web page at:

>> http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@...).

>>

>> In August 2001 list member Jack aka(Cornishpro@...) began

>> to

> conduct extensive research which he publishes as the Psoriatic Arthritic

> Research Newsletter monthly in our emails and digest format. Many thanks

> to

> Jack. Back issues of the newsletter are stored on our PA webpage.

>>

>> Also remember that the list archives comprise a tremendous amount of

> information (Over two years of messages and answers).Feel free to browse

> them at your convenience.

>>

>> Let's hear from some of you lurkers out there! If you have a comment or

> question chances are there is a person who has been around a while who can

> help you out with an educated guess for an answer. If not we can at least

> steer you in the right direction with a good website to go to for the

> answers.

>>

>> Blessings and Peace,

>>

>> Atwood-Stack, Founder

>> Alan , Web & List Editor

>> Jack , Newsletter Editor

>> Pat Bias, List Editor

>> Ron Dotson, List Editor

>> and many others who help moderate (thank you!)

>>

>>

>>

[Guest guest]

Ronnie /

I had been on Neurontin since January of 2002. I was prescribed it for

lack of sleep and EDS/fatigue by my rheumatologist - after tricylics

proved intolerable. I saw no improvement. I also saw a leading neurologist

in March who decided that I had Restless Leg syndrome, and asked me to

continue on the Neurontin. I have seen no improvement and stopped it last

week. Answers to your survey below.

> Neurontin. What was the dose?

- 600mg 2/day

> Did you ramp it up as they have asked me to?

- NO

> Did you have side effects?

- No - or rather none that I could distinguish

> Could you have an occasional alcoholic beverage while on it?

- Not using alcohol because of MTX

> Did it sedate you?

- Couldn't tell because of EDS excessive daytime sleepiness.

On Wednesday, November 20, 2002, at 12:17 PM, Ron wrote: