NeuroTalk Support Groups - Introduction - 1st Post - Small Fiber Peripheral Neuropathy

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Introduction - 1st Post - Small Fiber Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/187828-introduction-1st-post-fiber-peripheral-neuropathy.html)

Quote:

Originally Posted by Wide-O (Post 979965)

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

I'm delighted for your friend as well... I'm curious, what is the title of his golf book?

Quote:

Originally Posted by joecarver (Post 979946)

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?

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 stomache and digestion. Anyway, I know others who are pretty happy with lyrica so we'll see

Lyrica and Neurontin are the same

Quote:

Originally Posted by joecarver (Post 979946)

I'm a bit confused. You see Lyrica is time released Neurontin. They developed Lyrica when Neurontin was coming off patent. The difference is you take neurontin 3x a day and Lyrica 2x a day. The active ingredient is the same.

Actually Lyrica and Neurontin have similar half lives.
http://en.wikipedia.org/wiki/Pregabalin
in fact gabapentin has a slightly longer half life than Lyrica!

Lyrica is chemical cousin of Neurontin. Neurontin was chemically altered to be more potent in smaller doses, and perhaps better absorbed. I believe that Pfizer was working on a timed release
version, but I don't know if that is still being done. Lyrica was intended for anxiety treatment initially, but didn't make FDA requirements for this indication, but in Europe it is used for that purpose, more commonly.

There are long acting gabapentins now..two of them, utilizing a different carrier. Horizant and Gralise.

Thanks mrsD, I was hoping you would join in...

How do these two drugs compare in cost? I have Medicare and supplemental insurance coverage.

Quote:

Originally Posted by SFNgirl (Post 980154)

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

Hi SFNgirl... thanks for joining in. Good luck with your new RX, and please let us know how your doing with Lyrica.

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.

Quote:

Originally Posted by mrsD (Post 980382)

Right again mrsD... yikes !!

90/300 mg Gabapentin - copay $1.00
90/300 mg Lyrica - copay $ 92.18

MrsD, is the size/potency similar?

No... they do not correspond milligram for milligram.

Lyrica is more potent than Neurontin. Think of it as "concentrated", but that is only a generalization.

We have here some data on both:
These drugs don't work spectacularly well considering how much they cost: Analysis of metastudies on Neurontin over many years showed about 30% of patients had some relief.

http://neurotalk.psychcentral.com/post829091-8.html

We also have on here someplace, the new studies from Pfizer themselves, that showed poor performance and no useful pain relief compared to placebo.
http://www.medicalnewstoday.com/articles/245032.php

IMO pain is pain... so keep this last link in mind when deciding on spending your money on Lyrica.

sfn and IVIG treatments

I have sfn also. Do you know much about IVIG for SFN?

Quote:

Originally Posted by Joe Duffer (Post 979894)

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. :wink:

Cheers,