Good news, and hope for painful neuropathy!


"This study is wildly surprising," says Oaklander.
"Although not a controlled clinical trial, it is paradigm-changing because the fact that an
immunomodulatory treatment was effective is the strongest evidence so far that some people have an
autoimmune cause of SFPN that can be improved. This paper offers not only a new class of treatments
but also further evidence of a new disease discovery. While immunotherapy isn't for everyone with
SFPN, patients with idiopathic SFPN should be systematically screened for all common causes, push
their physicians to identify their specific cause and discuss disease-modifying treatment options.
I'd also urge insurance companies, which are reluctant to cover this expensive treatment, to be
more willing to consider covering three-month trials in appropriately diagnosed patients."

An associate professor of Neurology at Harvard Medical School, Oaklander stresses that this "real-
world" retrospective case study needs to be validated in a prospective, randomized clinical trial,
something her team is seeking grant funding to conduct. She notes that learning more about the
mechanisms behind aaSFPN and tracking outcomes of other treatments should lead to less expensive
and easier to manage immunotherapies than intravenous immunoglobulin. In the meantime, patients
with SFPN and their physicians can find more information, including a list of recommended blood
tests, at Neuropathy Commons | Translating today's discoveries into tomorrow's cures.
Provided by Massachusetts General Hospital
APA citation: Autoimmunity may underlie newly discovered painful nerve-damage disorder (2017,
November 8) retrieved 15 November 2017 from 404 Error - The Page Cannot be Found
underlie-newly-painful-nerve-damage.html







This document is subject to copyright. Apart from any fair dealing for the purpose of private study
or research, no part may be reproduced without the written permission. The content is provided for
information purposes only.
2 / 2

--that a significant fraction of those with small fiber syndromes for whom no direct cause could be found (that is to say, labelled idiopathic) might well be suffering from autoimmune processes that our science was simply insufficiently advanced to identify.

There has been some work going on, especially with the human genome advances, on identifying more of these autoimmune mechanisms. It hasn't advanced very far as of yet, but I am hopeful, as most of the specific autoantibodies to components of peripheral nerve that are currently known were unknown even thirty years ago.

This article sends people to neuropathy commons for more information on which tests to ask to have done. Then...it sends them to Liza Jane's Neuro Lab Sheets

I have Primary Immune Deficiency and have IVIG every four weeks, and have had for 4.5 years.

My dysregulated Immune system also attacks my organs and systems, wrecking havoc. Both my Peripheral Nerves (large nerves in my legs) and small fiber nerves have been severely damaged. The attack is not autoimmune, because I have no autoantibodies (these show up on blood tests), but probably carried out by Cytokines or other biochemical substances used by the Immune System for our defense, but can be used for attacks on the body, as well.

I also have Sjogren's Syndrome (but not autoimmune, of course), hearing damage, lung damage, and bladder damage. I have severe coronary artery disease.

The underlying mechanism is damage from systemic inflammation.

Because my IVIG is for Immune Deficiency, it is not at a level which can help my neuropathies.

I wonder if massive infusions of IgG can stop the progress of neuropathy and reverse it? My neuropathy is of the demyelinating sort, and I would need re-mylination of my nerves for healing.

At this point I walk with braces and a walker. I take 3600 mg of gabapentin daily for major (but not complete) relief from my SFN.

Most of the world of conditions related to Immune Dysregulation (from whatever cause) is still uncharted. Medical Science has made small inroads into this territory. My husband is an Immunologist, whose principal work was on transplantation immunology. He was shocked when his own wife fell victim to major immunological conditions.

Regards, ElaineD

I believe the dose is higher for demylinating neuropathy, and if you have that, the dose would normally be approved.

But you sound like you might have Lyme, which causes both sorts of neuropathy. That's what causes my neuropathy.

Please get a full Lyme w/u from a doctor who actually treats late lyme.

Liza Jane

[QUOTE=LizaJane;1256241]I believe the dose is higher for demylinating neuropathy, and if you have that, the dose would normally be approved.

But you sound like you might have Lyme, which causes both sorts of neuropathy. That's what causes my neuropathy.

Please get a full Lyme w/u from a doctor who actually treats late lyme.

Liza Jane[/QUOTE

Thanks for this post Liza Jane. I have a very widespread and advanced SFN and ganglionopathy as part of Sjögren’s (high ANA and lip biopsy positive) but here in UK (I’m in Scotland) IViG and other big gun biologics such as Rituxan would only be available to me if my CNS were to become involved. I’m on the maximum dose of Cellcept but it appears not to be working and my case is up for review. I’ve asked numerous times about IViG but they say it’s too expensive on NHS and wouldn’t be appropriate anyway since they think the SFN of Sjögren’s is generally self limiting. Someone clearly forgot to tell mine to limit itself as every part of me is now turning increasingly numb and I’m losing balance and a liability crossing roads etc!

Do you feel brain fogged? Maybe you could get them to do a PET or SPECT, and if it's abnormal, they'd count that as cns involvement?

Thanks. I’ve had several brain MRIs show white matter but they say it’s existing damage not ongoing inflammation. A lumbar puncture showed paired o bands but this is too non specific. I’ve also had full body CT show nothing untoward apart from lumbar degeneration. I will ask about further scans but they are reviewing my case just now so we will see.

Maybe it would be easier to get approval (or pay) for Rituximab than IVIG.
Here the cost of a single Rituximab and IVIG infusions are about the same, but the frequency of Rituximab infusions is lower, about 16 IVIG vs 2-4 Rituximab in the first year.
I read there is a generic version of Rituximab in India that is much cheaper.