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Old 05-02-2013, 04:30 PM #1
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Originally Posted by joecarver View Post
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
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Old 05-03-2013, 10:13 AM #2
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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.
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Old 05-03-2013, 11:14 AM #3
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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.
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Old 05-03-2013, 04:32 PM #4
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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.
Right again mrsD... yikes !!

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

MrsD, is the size/potency similar?
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Old 05-03-2013, 04:48 PM #5
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Lightbulb

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.
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Old 05-04-2013, 10:13 PM #6
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Hi SFNgirl... thanks for joining in. Good luck with your new RX, and please let us know how your doing with Lyrica.
Hi all, I will keep you posted on how I do with the lyrica. My neurologist explained that neurontin and lyrica are sister drugs but for some reason some people do better with one than the other, and people generally have said they feel less sedated on lyrica. I don't know but figured it was worth a try. And I am now getting organized about all of the good suggestions here about supplements and creams, also starting at a new gym with a trainer Monday, hoping some balance of exercise, nutritional focus, lyrica, and Tramadol will give some relief. Tramadol really is the one thing that seems to take a little edge off, and I am very aware quickly by the pain level when I skip or forget for a few hours.

As for ivig question, I have not discussed it with my doc, but I was given high dose steroid infusions for 2 months, with no success. My neuro's theory was that this SFN is likely caused by autoimmune, and hoped the steroids would stop the immune system attack and wipe out the SFN. He seems to still be looking for autoimmune but has not mentioned other treatments like ivig. I think some do get relief from steroid treatments.
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Old 05-11-2013, 05:14 PM #7
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[QUOTE=SFNgirl;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 stomache and digestion. Anyway, I know others who are pretty happy with lyrica so we'll see

Hi SFgirl
I also have SFN and take lyrica. I started taking last Dec,. Its going on to 5mos since I started ( I do not see much improvement yet). I am only on 225, I am sensitive to meds so Im going slowly. Do you have any side effects yet? Is 300 helping you, I hope to get relief by 300 mgs. I have not gained any weight either and it seems I have less of an appetite these days too. Why does your Doc think its "autonomic stuff", Do you have stomach or digestion problems or any autonomic symptoms? So far my stom and digestion are normal. Just some constipation from taking lyrica.
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