Introduction - 1st Post - Small Fiber Peripheral Neuropathy
 

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,

ive read that going cold turkey off of gabapentin can cause seizures. gabapentin is an anti seizure medication. you may have come close.

gabapention
 

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 Joe,

When were you first diagnosed?

When did you first experience neuropathy symptoms?

Hey Jack,
I have SFPN. I can not imagine my life at this time without this forum or Lyrica. I hope that you get feedback about Benfotimine from someone here. Some people have complained of weight gain with Lyrica. So far my weight has stayed under control. My neuro stresses the importance of diet, with an emphasis on leafy greens and fish oil. I juice bags of kale. I also take more vitD and B12 (empty stomach for absorption).
The PN forum is priceless for keeping up with it all. I wish you good luck and I hope we get to know jack..

Welcome Joe/Jack & Joe. :wink:

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:

Cold turkey is not a given, but the risk is real, so weaning off is always a good idea.

Benfotiamine is a more potent form of thiamine: vitamin B1. It was once the treatment of choice for some forms of PN, and there are a lot of members here who use it to great success. If is available OTC. I use it too, 300mg/day FWIW.

Hi Mel,

It sounds like your neuro is providing good advice. The info from this forum seems to support your doctors views. I too have adopted this diet, which has helped in loosing most of the weight I had gained.

Thanks for the well wishes,

Thanks for the note - I'm currently taking 150mg Benfotiamine 2x per day on an empty stomach. It's been about a month...

Welcome Jack. I have good integrative MD's so I get great advice about supplements and diet. I have Autonomic Neuropathy/Dysautonomia. Benfotiamine, Alpha Lipoic Acid, B12, l carnitine and others along with a very good diet with no bad carbs or gluten has been helpful.

Thanks Sally,

I have been taking the same supplements as you, along with other vit/sup recommended here by mrsD and others.

I'm still looking for a doctor/someone locally (Portland, OR area) who can personally give me some positive direction and hope. :)

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

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
 

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.

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.

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?

We've had a number of people--
 

--post about getting Intravenous immunolglobulin (IVIg) over the years for a variety of conditions--if you search with 'IVIg' you'll pull up a whole host of threads (and not just threads involving people with neuropathy, but also people with a large range of suspected autoimmune conditions).

IVIg is very expensive, does not work for everyone, and often comes with side effects of its own. The mechanism by how it works, when it does, is not well understood, though it is thought that it cleans out rogue autoantibodies that are attacking bodily tissue. The effect, though, varies in how long it lasts, so many for whom it works are looking at a long treatment regimen--the infusions have to be repeated at regular intervals as the effects diminish and symptoms return.

Part of the controversy (beyond the expense) is that many insurances won't pay for such treatments without incontrovertible evidence of autoimmunity. this is tricky, particularly in conditions in which the autoantibodies are not the standard anti-nuclear antibody (ANA) variants found in various vascular/connective tissue disorders (i.e., lupus, Bechet's, Sjogren's, polyarteritis nodosa . . .). Many of the autoantibodies to peripheral nerve, for example, have only been discovered/identified over the last two decades and it is thought there may be various others still unidentified and in some cases they may be unique to the individual and his/her tissue types (there's a lot of work going on in this area now with the human genome research), so one really needs a strong medical advocate to push for said treatment.

Some well known research neurologists are strong advocates for this type of treatment when autoimmune mechanisms are suspected (Dr. Norman Latov at the Cornell-Weill Center for Peripheral Neuropathy being a notable example). Still, opinions about its utility vary, even among research neuros at the same facility.

You might want to check out IVIg Living:

http://www.igliving.com/

--as well as the GBS-CIDP foundation (many people with Guillain Barre Syndrome and/or Chronic Inflammatory Demyelinating Polyneuropathy have received IVIg treatments):

http://www.gbs-cidp.org/

--for more information and individual experiences.

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.

Hey Jack ,
I'm on only 75mg of lyrica at night and if I miss it-i get the exact sensations you talk about!

Not that I want to promote narcotics, because they are addictive-but the fentanyl patch has reduced my severe burning by 60-100℅, depending on the day/hour/stress

I take benfotiamine and b12 for good measure-since pain relievers don't fix anything!
I'm giving self hypnosis/relaxation a shot as well.
We can't underestimate the healing power of our mind:)
Best,
Feather

[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.