Small Fiber Neuropathy

Hi @cwallen9. I am new to this or any forum. I am sorry to hear that you suffer from SFN. I have been dealing with it for over a decade. Like others who have posted to this forum, I have tried extreme doses of gabapentin, lyrica (very similar to gaba), cymbalta, nortriptyline, amitriptyline and most recently methadone. I am currently taking lyrica, cymbalta and nortriptyline just to take the edge off of the debilitating pain in both legs and feet. I had pretty much given up on having any normalcy in my life until two months ago. I thought I would just try to bear what time I have left without any hope of a pain-free day.

After prescribing methadone for me, my neurologist referred me to the local pain clinic because he did not want the liability of managing my long-term use of methadone. I assumed that the pain clinic would just be a pill mill. To my surprise, my primary physicians at the clinic asked me to read up on Neurotransmitter Implants. I was less than excited by what I read. A year went by before I broached the subject with him again.

My implant procedure took place about 2 months ago. While my experience has been less than spectacular, I can honestly say my days are more tolerable. In fact, some have been down right pleasant. I cannot recall the last time I could say that. Food for thought.

Jump to this post

Hello,
I am so sorry you have dealt with such a difficult time with SFN. If you don't mind me asking, which implant did you get and how has it improved your daily living? I am greatly considering getting it - gabapentin does not help enough.

Jump to this post

Hi Cwallen9,

Sorry that you have small fiber neuropathy which is causing you so much pain. Your list of medications is very familiar. Really hope that your implant continues to provide increasing relief.

Just curious, did any of your doctors suggest IVIG the antibody therapy? IVIG using antibodies from around 1000 transfusions to bolster your immune system, provide symptom relief and provide energy to do the things you want to do at least part of the month.

They did a study at Mass General Hospital in Boston of IVIG with 55 patients that had small fiber neuropathy did not have the traditional marker for autoimmune or inflammatory processes and 70+% had positive responses to the treatment. They are now recruiting for a double blind study on the results of IVIG on SFN patients.

My doctors have diagnoses me with rapid onset peripheral neuropathy that is autoimmune induced. I have small, large, motor and autonomic neuropathy. Last July I was close to having to be in a wheelchair to get around, I actually needed one to make an airplane connection.

My IVIG in August was amazing and completely got rid of some terrible symptoms like intense burning in my hands and feet. Many have never come back. Other symptoms get better with the treatment, but as my liver processes the antibodies out of my system (21 day half life), some other systems slowly come back. But most exciting was that by day 2 my walking was improving dramatically. Walk with a bit of a shuffle, but I can slowly walk my dog and get around the grocery store with no problem (shopping cart walker helps!).

My experience is that doctors don't want to prescribe this as it adversely impacts their own finances and the amount of bonuses and raises. Additionally, insurers put pressure on doctors and doctors groups not to prescribe such expensive remedies ($15,000 per months for the rest of your life in many cases). It is my understanding that the insurers are reducing the number of diseases (BCBS has 15) the are at least covered for a 3 month trial of IVIG. This is the reason for the double blind study to force insurers to at least patients with SFN try IVIG.

A friend I know was able to go back to work full time after her first infusion. She has SFN and no autoimmune or inflammatory markers.

IVIG is expensive but how much is a life worth? Shouldn't people who have symptoms that are destroying their traditional life get a chance to see if IVIG works? Insurers have to allow IVIG if it is medically necessary. This means in my case I used my retirement funds to pay for a 3 month trial and proved it works. Now BCBS is paying for my IVIG treatment and is going to reimburse the money I spent on the trial so I will get my retirement funds back.

I monitor this site and there is very little discussion about the effectiveness and side effects of IVIG. If it works its a miracle, it also can be an expensive disappointment if it doesn't work. All I know is that 4 people I know including me have benefited greatly and 2 people I know had no effect from the injections. Hope there will be an active discussion here about the use of IVIG, despite doctors and insurers cooperating to limit the use of this drug.

One more thought is that if more people use this, scientists will develop bacteria (or pigs?) to produce the antibodies like they do with insulin and other natural components. For now, patients with debilitating symptoms need to demand a 3 month IVIG trial, and get a second opinion if there first doctor is resisting to prescribing IVIG.

Good luck!

Jump to this post

Good morning Artic Mark,

I was wondering if I could talk with you about IVIG for autoimmune Small Fiber Neuropathy?

Thank you!

Jump to this post

An additional question:

The Neurologist biopsied my left leg only. I know this was done originally just to screen for SFN, but as I have symptoms consistent with SFN in all extremities, should I ask them to biopsy each one separately? IE is it clinically significant to do each, or does a positive test indicate the neuropathy everywhere?

Jump to this post

I was diagnosed 3 years ago with SFN. It’s truly a nightmare!!!! Have been maxed out gabapentin for 2 years. Not much help. Currently on lyrica. Not much better. Occasionally need opioids to cope with pain. But I hate all pills!!!! Awaiting an appointment with an SFN specialist at Mass General Hospital, but it’s not until January. Very depressed!!!!!!

Jump to this post

Hello @budjo611, Welcome to Connect. You are not alone with hating all pills and being depressed over the pain from small fiber neuropathy. I hope you find out more and are able to get a treatment that provides more relief at your upcoming SFN specialist appointment at MGH. There are a few sites that can help you learn more about neuropathy and possible treatments that might provide some relief.
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

Have you done any research on complementary or alternative treatments for neuropathy?

Jump to this post

I’ve tried many combinations of meds. Including different antidepressants. None seem to help much. As for alternatives, I’ve tried medicinal THC. No help, and I hate being high. Just makes me more depressed about my pain and loss of mobility. I was very athletic. Skiing, tennis, hiking, golf. All gone!!!!!! As for complementary, not sur what you mean.

Jump to this post