Boatloads of Neurontin

[skye55]

I have been on Neurontin for ten years. It's nice that I can use the generic now. I have tried to stop Neurontin several times, but each time I weaned off to nothing, I noticed emotional lability (medicalese for emotional instabliity). My pain doc says Neurontin is used for mood elevation sometimes. Like you, Susan, I don't get sleepy taking it. In my case, I can't really say that the Neurontin helps the centralized pain, but anything that helps my mood helps me with coping with very severe pain. I currently take 1200mg daily-I've taken much higher doses in the past but had no success as far as helping the pain.

I tried Lyrica, but had pretty severe problems with swelling and had to get off of it. I, too, am very sensitive to drug side effects. A little goes a long way with me. Like you said, we are all different. It can take a very long time to find anything that really helps. Be patient and good luck with your pain journey!

[susan]

I was contacted by a Care Manager at my insurance company. She asked what she could do to help so I asked her to ask the pharmacy committee (the ones who make the decison regarding appeals for denied drug coverage) what is FDA approved for neuropathic pain following surgery for spinal cord tumor. FDA approval seems to be their guideline in what they will approve. I am curious to hear their response.

[susan]

My Care Manager informed me that the pharmacy committee wants me to see a pain specialist if the Neurontin doesn't work before they will consider paying for Lyrica. That is all well and good, but it means more time off of work, another specialist co-pay, and another retelling of my story. I am loathe to do any of those things. I guess the recommendation of a neurosurgeon and a spinal cord rehab specialist isn't enough.

She did say that if I could they had any research to support Lyrica for spinal cord tumor pain I could have them send it to them. I found articles on line about the European Commission approving Lyrica after a study of 10,000 patients with spinal cord injury showed that it effectively relieved pain. I forwarded the link to her.

Here are two links if you are interested:
www.medicalnewstoday.com/articles/52175.php

www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/09-18-2006/0004434878&EDATE=

If anyone else is having trouble getting approval for the drug, maybe it will help.
In the article the mention that we are group of patients who live with excruciating pain who have had limited treatment options. Also that we have been misdiagnosed and under treated.