BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

I was wondering if anyone is on Neurontin? Since I am in a bad flare again and my back has opened back up yet again, this time on it's own, he has prescribed Neurontin for the pain that is now going down my left side and up under my arm. I looked up the side effects of this drug and am scared to take it. It has some really nasty side effects. Has it helped anyone? Anyone had bad side effects?
Does 300 mg 10 times a day sound right? I am also on cellcept, thalomid, and percocet and advair for COPD. Any advise will be greatly appreciated.

Share

Reply to This

Replies to This Discussion

I've been taking Neurontin for a few months and the only side effect I've had is weight gain. In the beginning it will make you very tired and at times dizzy so be careful driving (& using heavy equipment LOL).

3000 a day sounds very high to start out with, I started out at 300 mg a day months ago and only now I'm up to 2400 mg a day.

For me it hasn't helped much during a flare up, but in between it does help ease the "everyday" pain of fibro.

Hope this helps some.

Reply to This

I've been on it for a few yrs..I could not take it in large doses, it seems to help some at 900mgs its cause dizziness and tiredness for most folks but you get use to it...It cause less side effects the lyrica which is chemically close
mich

Reply to This

I have taken it for only a WEEK and within 2 days i was so depressed i dindt know what to do with my self. I was so sad for no apperate reason. as soon as i stopped taking it i was fine. but everyone reacts differant to everything. so just because i had a reaction to it doesnt mean that you will. Good luck

Reply to This

I am on Neurontin, been on it for a year, No side affects. With out it i can't stand up at all for the pain in my legs and back. They write those side affects, for you to watch for them that does not mean you will get them. But as you know all Meds. have a side affect. But you may take it and be ok
I hope it helps you and i will keep you in prayer
Hugs Martha

Reply to This

i take neurotin as well. it makes me gain weight. it is suppose to help me sleep but it doesn't and i don't think it helps my pain very much i hope it helps you
hugs,
kimber

Reply to This

Hi Sheila,

I've noticed that it's been almost a year since you posted this question. I was wondering if you're still taking Neurontin – and if yes, how are you doing?

I ask because it was after approximately 1 year that I started having very negative side effects. I started taking it in 2004 with a low dosage of 300 mgs per day ( 100mgs 3x daily ) and gradually increased to 3,000mgs daily. Back then, the doctor I was seeing told me that there was seemingly no “maximum” to the amount of capsules a person could take – he had one patient, he told me, who was taking 18,000 mgs per day.

Initially, all went well. But the gradual increase was due to necessity – it seemed that only by increasing the dose would I experience any pain relief. To put it differently: it had an addictive effect on me.

Eventually, I started noticing side effects. Specifically: extreme irritability, constant restlessness, insomnia and fitful / disturbing sleep – meaning, when I was able to finally get some sleep, I wasn't able to sleep deeply or enter into a dream state.

It also seemed to me that the more I took, the less it worked. Confused by this, I advanced the follow up appointment with the prescribing doctor – who had new information to share with me. It seems I was exactly right in feeling that the more I took, the less it worked. He informed me that since he'd first prescribed it to me, the medical community had discovered that there was indeed a “plateau” for this medication: 1,800mgs / day. AND: Anything above that amount, he told me, would actually reduce the effectiveness of the medication.

This is how he explained it to me: If I took 1,800mgs throughout the day and then took even only an additional 100mgs, that additional 100mgs would actually decrease the benefits of the 1,800mgs already in my system.

With this knowledge, and the fact that I was only having negative side effects and no longer any pain relief, I stopped taking Neurontin. What I wasn't told to be prepared for and didn't anticipate: I went through extreme withdrawal – it was pure hell.

I've heard similar horror stories to mine - and I've also heard rave reviews about Neurontin. In the end, I believe it boils down to each person's own unique chemistry: for some it's the medication nightmares are made of, for others it's a miracle drug.

I hope Neurontin is working well for you and that you're one of the many people who thrive on it.

Below are a few Neurontin related links, should you be interested.

Basic Info:
http://www.rxlist.com/neurontin-drug.htm

User Reviews:
http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=neu...

Side Effects:
http://www.drugs.com/sfx/neurontin-side-effects.html

Drug Interactions:
http://www.drugs.com/drug-interactions/neurontin-capsules_d03182.html

Reply to This

I AM ON NEURONTIN AND IT HELPS A LIL BIT ..IM A LICENSED PHARMACY TECH SO IF U HAVE NE QUESTIONS ABOUT MEDS FEEL FREE TO ASK ME . I HAVE MYSPACE IF U WANNA ADD ME. . /FIBROSUPPORT

AS THE DOSES UR DR HAS U ON IS WAY TOO MUCH ..I DONT KNOW HOW UR EVEN FUNCTIONING ON THAT. U NEED TO HAVE UR DOSE BROUGHT DOWN HUN SO PLZ CALL UR DR. AND ASK IF U CAN LESSEN THE DOSAGE OR JUST DO IT ON UR OWN. I HOPE I HELPED IN SOME WAY ♥

Reply to This

Im taking neurontin, 600mgs 3 times a day,i think alot of people take that amt.

Reply to This

RSS

About

Badge

Loading…

Forum

Allison Abrusci

Plaquenil/Memory

I have a few questions for my fellow Lupie's. I was diagnosed with Lupus at the age of 16 but it didn't become active with SLE until August (I'm 25 now). I have been on Plaquenil or about 6 weeks n...

Started by Allison Abrusci in MEDICAL QUESTIONS 20 minutes ago.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -----------------------------...

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC 15 hours ago.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -----------------------------...

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC 15 hours ago.

Niki

Scared about Cytoxan 3 Replies

I had a kidney biopsy last Friday. My Dr called today saying he was going to take me off the Imuran and start Cytoxan treatment for 2 months. I've been reading up on this med and it has me scared. ...

Started by Niki in MEDICATIONS. Last reply by Carla Giacoio 1 day ago.

joy

anyone with fibro living inyorkshire England 1 Reply

Hi my name is Joy I am 46yrs old I live in Barnsley sth Yorkshire, I was diagnosed with Fibro and CFS 2 years ago and searched many sites and places for other people with the same condition, I have...

Started by joy in DO YOU LIVE NEAR ME?. Last reply by Carla Giacoio 1 day ago.

Dotti Obert

In Severe Pain 5 Replies

I got up this morning, and the pain was so severe. I haven't felt pain so bad in a long time. I took my meds, and they didn't seem to make a difference at all. This makes me so tired to have to try...

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Nov 30.

julie

Lymphoma, or just the lupus??? 22 Replies

Hi everyone! I recently saw my doctor who told me my lupus was flaring. But because my doc also noticed a swollen lymph node on my neck and I had some symptoms such as night sweats and itching, I w...

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Nov 30.

Michelle

My Hysterectomy and HRT 2 Replies

I have Lupus, MCT, Sjogrens syndrome and low b/p, my list does grow. I recently had a total abdominal hysterctomy. I was loaded with endometriosis, I no longer has my ovaries, cervix and everything...

Started by Michelle in MEDICAL QUESTIONS. Last reply by Shelly Binkley Nov 30.

Kiara

Has anybody been diagnosed with lupus with a negative ANA? 34 Replies

I've only met 2 persons, and obviously myself!!! Hope to read from you guys!!!!

Started by Kiara in BLOOD WORK. Last reply by Shelly Binkley Nov 30.

Vee Marie

Fibromyalgia & Disability Benefits? 10 Replies

Has anyone in here with Fibromyalgia had success being approved for SSA Disability Benefits? If yes: any helpful pointers? I just got off the phone with an advocate who told me that Fibromyalgia i...

Tagged: input, info, advice, ssa, disability

Started by Vee Marie in OTHER QUESTIONS. Last reply by Shelly Binkley Nov 30.

colsbutterflies

ANYBODY LIVING IN FLORIDA?? 4 Replies

I AM SERIOUSLY THINKING OF MOVING TO FLORIDA FROM PHILLY. THIS WILL HELP MY FINANCIAL AND EMOTIONAL STRESS GREATLY. SO I WAS WONDERING, IF WE HAVE ANY FLORIDA LUPIES, AND HOW THE CLIMATE THERE IS O...

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Carla Giacoio Nov 30.

Amy Jill

ANYONE HERE EVERY BEEN ON XYREM / SODIUM OXYBATE

Hello, I was just wondering if anybody here has tried Sodium Oxybate or Xyrem for sleep. I have been going back and forth with this for over a year. But last week when I got my pharmacy newsletter...

Started by Amy Jill in MEDICATIONS Nov 24.

Donna J Farr

Hello Everyone 4 Replies

My Back Surgery has been post poned, so I really don't know when they rescdudle again My Headake are getting worse so it will be a while before they reschdudle. I have to see my family Doctor on Mo...

Started by Donna J Farr in MISCELLANEOUS. Last reply by Donna J Farr Nov 24.

Sandy Medine

SOMETHING WONDERFUL IS ABOUT TO HAPPEN

August 28 , 2008 SOMETHING WONDERFUL IS ABOUT TO HAPPEN The What's Up On Planet Earth? energy alerts are offered several times per month by viewing them here. Your financial support makes it poss...

Tagged: TO, HAPPEN, ABOUT, IS, WONDERFUL

Started by Sandy Medine in MISCELLANEOUS Nov 17.

Joey

Need Buddies in OHIO 1 Reply

I live near Cleveland in Ohio.... anyone out there in the same area?? I have no friends with autoimmune diseases that live near me! :( Thanks, Joey

Tagged: ohio

Started by Joey in DO YOU LIVE NEAR ME?. Last reply by Michelle Nov 14.

Roxanne

New Here 1 Reply

Hi, my name is Roxanne I'm 21 years old. I was diagnosed with Lupus when I was 20. I also have another Autoimmune Disease Antiphospholipid Antibody Syndrome. I have Endometrosis, MTHFR Disease (blo...

Started by Roxanne in INTRODUCTIONS/PERSONAL STORIES. Last reply by Stacey Mommy to many Nov 12.

Donna J Farr

Surgery/Nov 10th 2 Replies

I am so afraid so afraid of this surgery, It is surgery on my back. I have degenerated disc disease in L4 and L5 is just about nothing there. The surgery will take 8 to 10 hours and I just pray eve...

Started by Donna J Farr in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Donna J Farr Nov 9.

Sandy Medine

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles ~ a way to see differently ~ not a quick fix but a process to apply to any situation that ultimately...

Tagged: on, based, Jampolsky, A, Course

Started by Sandy Medine in MISCELLANEOUS Oct 31.

Sandy Medine

The Cancer Cure Video that circled the globe in 31 minutes

Go watch the video by going to the following webpage: http://tracking.ilinkmd.com/Partner/14774

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

Sandy Medine

The Cancer Cure Video that circled the globe in 31 minutes

The Cancer Cure Video that circled the globe in 31 minutes by Danica Collins t's not everyday that I find a good reason to send an e-mail to my entire address list. Today, I sense a moral oblig...

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

© 2009   Created by Butterfly Kimberly on Ning.   Create a Ning Network!

Badges  |  Report an Issue  |  Privacy  |  Terms of Service

Sign in to chat!