Neurontin

March 2, 2005

Gene, the Neurontin caused me to be depressed as well and extremely

forgetful. It did help the pain, but I could not tolerate the side effects.

I was only at 900mg. All medications affect each of us so very

differently. It is vital that each one of us stay in close communication

with our respective physicians on how the medications are affecting us, good

and bad.

Blair

March 11, 2005

J,

Assuming that you are in the 1/3 of people who are instant responders to

Neurontin, you should be able to find a suitable dose that works for you -

whether it is large or small and remain comfortable on it.

Assuming if you are in the 1/3 of people who are helped slowly with Neurontin,

it may take several months to get to a dose that's right for you, and that may

mean increasing the dose to help with the pain control.

If one takes Neurontin and still has pain, some doctors, instead of increasing

the Neurontin, will add another medication to help with pain. Assuming you are

in the 1/3 of persons who do not respond at all to Neurontin, your doctor will

most likely try other medications/and or pain therapies to keep you comfortable.

G

March 11, 2005

J,

Neurontin is the only drug I've been given so far. I started off with a very

low dosage of 300 mgs 3 times a day. That had to be doubled before I felt

any kind of pain relief. I had about a week and a half of pain free life and it

came right back. Since then the med was tripled and and I'm still having

severe pain. I'm hoping some pain will be gone after the plantar fascia surgery

this June.

Seems like a long time to wait for this surgery but I guess our operating rooms

are booked up til then. I've had the same surgery on the left foot years ago

and have hardly any extreme pain in that foot. I'm hoping it will do the same

for the right. But yes, my experience with Neurontin has been that pain relief

is temporary until the dosage gets raised.

Elaina.

April 14, 2005

I take 1200 mg of neurontin a day. In the summer I can drop to 900 because warm

weather some how helps lessen my pain. The bad part of the Neurontin for me is

my sense of smell isn't as good as it once was. I am never completely out of

pain but the Neurontin makes it bearable. I take Vitamin C, alpha lipoic acid,

and creatine which my doctor thinks is helping me since on top of the CMT I am

now a diabetic. The less you can take the better I think. You would be

because on 900 a day there isn't much farther you can go taking more with out

side affects like fuzzy eyes because it can affect your optic nerves according

to my neurologist. Hopes this helps.

Cathleen in Arkansas

April 14, 2005

Blondee,

I did not (have not) had the good experience that Gretchen had with

Neurontin. I have been taking it for about 6-7 months and my pain always comes

back.

Like you I started at a low dosage and have worked my way up to 2700 mgs per

day. The pain seems to disappear for a week or two when I first raise the dosage

but after that the pain slowly comes back. I didn't notice any change in my

energy level except for the first day without pain. After that it was right

back to the same ol' same ol'. I hope you will have good luck with it as it

really is a good drug for most.

Elaina/NY

April 14, 2005

I also wanted to mention that the only side effect that really stands out

with me is short term memory loss. My neurologist did warn me of this before I

started taking Neurontin but I don't think I really believed him. My memory

has always been really good. Now I find people saying to me " you already said

that " .

Elaina

April 15, 2005

Hi Blondee

I started with 400mg/day in 2000, and I gradually worked up to 2100mg/day.

The last increase was about a year ago to 700mg - 3 times a day.

For me, Neurontin does work. I have very little pain at 2100mg/day.

The major side effect I have experienced is fatigue. I suspect my weight

gain and short term memory loss may be caused by Neurontin.

Regards,

April 25, 2005

I too gained alot of weight. But not sure which meds that I am on caused this.

Laurie in Sarasota

July 6, 2005

Hi Cathleen,

I also () have pancreas problems which I also inherited from my fathers

side of the family, my grandmother having hemochromatosis, and have spent 3

bouts in the hospital from it. I would like to start on Neurontin and can you

please tell me what company makes it? I am getting some meds free from purdue,

which would have cost 500.00 a month. Thanks for the information.

July 8, 2005

Parke- (Pfifer merged with them) makes Neurontin. They have a patient

assistance program for those whose income is 25,000 dollars a year and less with

no insurance to cover meds. I will get the information to get the forms you

need to fill out and email them to you dirrect.

Cathleen

September 20, 2005

Missy,

I feel the same way you do. I am only 34 and I am in alot of pain. The mornings

seem to be worse. I can hardly move when I first get up.

I don't notice any of the side effects of the Neurontin.

September 20, 2005

Gretchen,

Thank you so much for the information. I will definetley give N some time to

work. Thank you also for the encouragement. I appreciate it!

Missy

May 17, 2008

Dear Ann,

Thank you so much for sharing your problems with Sprycel. I was wondering

why you took yourself off Gleevec and did you have the doctor's approval or

change doctors? Sprycel can be a wonderful drug for some and for others, well

not so much. I was on it myself for 2 years and the doctor abruptly took me off

after I developed pneumonia for the first time in my life, even though I had

been getting pneumonia shots every 5 years. I also had pleural and pericardial

effusions. My dose was lowered and lowered until it got to 20 mg. a day

(starting out at 140 mg. a day), which by any measure is sub-optimal. There are

exceptions to every rule, as we all know and some who reached PCRU have been

known to sustain it at 20 mg. My problem is I have not gone beyond CHR. On the

higher doses I experienced fevers, terrible headaches and bone pain that I could

barely get out of bed, but I also was beginning to show that I could get rid of

some of the Ph+. I always believed in the drug and it was my proposal to slowly

go back up to the optimum dose, but I never did, because I was suddenly taken

off the drug, without warning.

I don't know where you live, but you may not have the opportunity to see an

oncologist who specializes in CML or even any of the leukemias. I had a doctor

who treated both CLL and CML and I was very happy with him. After being on

Gleevec for 4 years, I suddenly found myself in the Sprycel (BMS) trial and was

switched to another doctor who conducted the trial, Dr. Talpaz. He left and

went to Michigan and I had to transfer to yet another doctor. I chose Dr.

Kantarjarian and I am happy with him. If I switch to another trial, I may yet

find myself in another doctor's office; however since my second BMA showed a

reduction in the Ph +, even though my dosage was reduced twice. Side effects,

yes they are about the same as Gleevec, but the hives are the worst I've ever

had. I am having a bout with them now. Atarax for the itching and Prednisone

for the hives. I take Lomotil and Paregoric for the diarrhea when I get it,

sometimes it starts before I go to bed. Maybe some day they will have a combo

what kills off the CML cells and at the same time takes the side effects away.

I can dream, can't I?

Again, thanks for sharing, it helps to know you are not the only one with

the symptoms and side effects.

Blessings,

Lottie

May 17, 2008

Lottie: i couldn't take the drug anymore. my body was saying no more. the

swelling in my legs and my bowels were telling me no more. i was on for five

years. the first two years were manageable but as the years went on it appears

as though the drug toxcity in my body was building, making the side effects

appear more intense and not go away. it was like battery acid to me. sorry, i

couldn't live a good quality of life on gleevec, so i found a doctor who would

listen.

ann grimm

[ ] Neurontin

Dear Ann,

Thank you so much for sharing your problems with Sprycel. I was wondering why

you took yourself off Gleevec and did you have the doctor's approval or change

doctors? Sprycel can be a wonderful drug for some and for others, well not so

much. I was on it myself for 2 years and the doctor abruptly took me off after I

developed pneumonia for the first time in my life, even though I had been

getting pneumonia shots every 5 years. I also had pleural and pericardial