Originally Posted by Wide-O

Golf eh? A friend of mine wrote a book about it and it's now turned into a movie - so he's well chuffed.

Originally Posted by joecarver

we are all different, I had no problem dropping down from 1800 mg after no relief. I have burning sensations sporidicly all over arms and legs, am trying Lyrica now, suggested by a Mayo neuro. Anybody had any success with Benfotimine?

Originally Posted by joecarver

we are all different, I had no problem dropping down from 1800 mg after no relief. I have burning sensations sporidicly all over arms and legs, am trying Lyrica now, suggested by a Mayo neuro. Anybody had any success with Benfotimine?

Originally Posted by SFNgirl

Hi all, I also have SFN, diagnosed in January. Went up to 2700 mg of gabapentin, and had no perceptible pain relief but was wiped out. My neuro told me to take one pill away at a time every 3 days until off completely. Then worked my way up to 3 x100mg lyrica per day. Just got to this level, so can't say yet, but seems a bit better. I have actually lost weight through this whole experience, which came out of the blue in October, and seem to have no appetite. Doc thinks it may be the autonomic stuff impacting my stomach and digestion. Anyway, I know others who are pretty happy with lyrica so we'll see

Originally Posted by mrsD

Lyrica does not have a generic yet. Neurontin does.

You would have to check with your insurance to see if it covers Lyrica. Some do, but charge a high copay.

Horizant and Gralise are brand names too, and may not be covered by Medicare. You'd have to check on those also.

Originally Posted by Joe Duffer

Hello folks… I’m a 67 year old guy living in the great northwest (Portland, OR area). I’ve suffered from pretty sore feet for 7 years. After extensive testing (including skin punch biopsy), I was recently diagnosed with Idiopathic Small Fiber Peripheral Neuropathy. I was basically told the disease was incurable and that pain management (drugs) was the only help they could provide. I was given a prescription for Gabapentin (Neurontin), with 1200mg x 3 per day being the upper limit. I was instructed I could ramp-up the dosage to find the level I needed.

Besides gaining 25lbs in two months and feeling sedated, I also didn’t feel any perceptible pain relief, and decided to quit. I was up to 2700mg per day when I quit, and was actually told by my neurologist that I could “cold turkey” Gabapentin if I choose. What followed was comparable to coming off a bad acid trip in the 60’s (not that I ever did that)… it felt like every nerve fiber in my body was “firing off” at the same time. Thinking I was going to die, I relented and took my normal dosage and began feeling better.

That’s when I began searching the internet for info regarding Gabapentin and SFPN. Finding and then spending a good bit of time on this forum, it seemed clear I didn't need to look elsewhere. Amazing wealth of information and an even more amazing group of people.

Anyway, I began to slowly wean myself off Gabapentin and am currently down to 300mg x 3 per day. However, at each new lower dosage, I felt nerve activity in my body I had never felt before taking Gabapentin. It’s like this drug can actually bring on neuropathy symptoms. I don't think I want to go lower as symptoms seem to become more acute even after a 100mg lower dose.

I've probably gone on long enough for a first post, so let me ask a question:
Can anyone recommend a neurologist, preferably a specialist in SFPN or PN, in the Portland, OR area? Seattle isn't out of the question…

BTW, my name is actually Jack… “Joe Duffer” is the name I've used on the many golf forums I hang out on. This name reflects my skill level.

Cheers,