Has anyone been prescribed plasma exchange for small fiber neuropathy.

@roslyn2314 - There have been a few members commenting about the treatment in other discussions. You might want to scan through them while you wait for others who may have some experience to respond.
Here's the link to the comments - https://connect.mayoclinic.org/search/comments/?search=plasma%20exchange%20for%20neuropathy

@roslyn2314
I have idiopathic small fiber neuropathy. My neurologist said there really is no cure for SFN but if you know the cause, that is what is treated to stop the damage to small nerve fibers.

Do you know the cause of your SFN? Typical causes are diabetes/pre-diabetes/metabolic syndrome, drinking alcohol, cancer chemo treatments, vitamin B12 deficiency, Vitamin B6 toxicity, other toxin exposures, other deficiencies (like iron impacting oxygen flow through tissues), autoimmune attack of small fibers, blood vessels affecting blood and oxygen flow to nerve tissues (like peripheral artery disease), etc.

Were you told why they are treating you with plasma and how it could help your condition? You need to be careful not to get treatment that are expensive but there really is no guarantee they can help. I was never offered any treatment by 2 different neurologists for SFN. They did support me taking alpha Lipoic acid and Acetyl l carnitine supplements and taking an antidepressant for chronic nerve pain. I also use capsaicin and other nerve pain creams or lidocaine patches which have also helped. I am trying to change my diet and detox as much as possible to prevent further nerve damage.

My neuropathy is idiopathic as well. However I also have coeliac disease and I had a shingles vaccine just before I came down with SFN which progressed rapidly after onset about 18 months ago. I have one prof of neurology who tells me there is no cure and another prof wanting to try different treatments. He prescribed IVIG which made no difference after 7 months of infusions . He is now talking about plasma exchange. I am trying to gather any info on the success or failure of this treatment. My SFN may be autoimmune driven may be vaccination result . All blood tests are completely normal. Almost like there is nothing wrong with me except I am loosing the ability to walk. And all the other symptoms that we all suffer pain tingling fatigue plus plus . Thanks for you reply anyway

@roslyn2314
When you say you are having a hard time walking, is it due to nerve pain, weakness or numbness or all of the above? Is the neuropathy confined to your feet or is it throughout your lower body (back/hips/buttocks/legs/feet)? Do you feel a heaviness in your legs when you walk? Do you have balance issues and dizziness?

@roslyn2314
Did you get EMG/nerve conduction testing, extensive neuropathy blood work panel, and testing for CIDP (autoimmune impact on nervous system)? CIDP requires a spinal tap to check for elevated proteins. Have you had MRIs of your lumbar spine/pelvis/hips?

@roslyn2314
When I look up plasma treatment, it seems it is tied to peripheral neuropathy, not necessarily small fiber neuropathy. Have you had bloodwork show you have inflammation?

See below from https://nyulangone.org/conditions/peripheral-neuropathy/treatments/plasma-exchange-for-peripheral-neuropathy:

Plasma Exchange for Peripheral Neuropathy

NYU Langone doctors may recommend a procedure called plasmapheresis, also known as plasma exchange. It is a treatment option for people with certain types of peripheral neuropathy that cause inflammation in the body, such as chronic inflammatory demyelinating polyneuropathy, a neurological disorder that causes progressive weakness and impaired sensory function in the legs and arms.

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Blood is composed of several components—red and white blood cells and platelets, which are suspended in plasma. Plasma is the fluid part of the blood that carries the cells and platelets.

During this outpatient procedure, doctors insert a needle into a vein in the arm and use a tube to connect it to a machine that withdraws blood. The machine eliminates the cells causing the inflammation and returns the “cleaned” plasma and other blood components back to the body.

People with peripheral neuropathy may need plasma exchange on an outpatient basis. Side effects include loss of appetite, nausea, vomiting, or diarrhea.

Plasma exchange can help people with some forms of peripheral neuropathy enter a state of remission, in which the signs and symptoms of the condition disappear.

Had all of those. It’s not CIDP.

@roslyn2314
Plasma exchange may not work if you have not been diagnosed with inflammation or something it would help treat. Seems to me like it would be a waste of time/money. I would want to focus on getting diagnosed properly before being treated. Some treatments have risks.