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Idiopathic Autoimmune Treatment For Symptom
I have an Idiopathic Autoimmune that was diagnosed by a Neurologist as the under lying cause of Small Fiber Neuropathy which is causing a dull burning pain in my right ear. This has always been accompanied with severe body chills. The frequency, duration and intensity for both the chills and ear pain have progressed together over the last 15 months and are now very severe. Neither my Neurologist nor my Primary Care Physician have ever recommended any course of action to calm these symptoms. Searches online detail the following for symptoms:
Steroids: Medications like prednisone are often used to reduce inflammation and suppress the immune system.
Immunosuppressive drugs: Drugs like azathioprine and cyclophosphamide help control the immune system's activity.
Biologics: These are newer medications that target specific parts of the immune system.
Plasma exchange and intravenous immunoglobulin (IVIG): These treatments are sometimes used for severe cases.
Has anyone had beneficial response from any of the above or something not listed.
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My polyneuropathy (8 years) is in my extremities, mostly loss of feeling and touch and is controlled through diet rather than meds. I have celiac and getting glutened causes balance, coordination, and other symptoms. You might try an elimination diet, or consider keeping a food log and seeing if your symptoms are worse during stressful times or after eating various food(s). My sister has Meniere's Disease and tinnitus, which is kicked off when she eats diary. I don't know if finding a neurologist that specializes in Small Fiber Neuropathy is an option, but he/she might give you more info. There is a lot of info online and in ResearchGate about Small Fiber Neuropathy, but most of what I found is somewhat generalized.
Hi dstone501957,
I have what I think is something similar, but the pain is in the skin of my hands. I have been dealing with worsening symptoms over 13 months now (extreme sensitivity in my skin making it difficult to do something as simple as holding a fork and knife when the symptoms are bad).
While trying to get a diagnosis for this issue, I did get a diagnosis of Cutaneous Lupus (due to having both Lupus Profundus and Tumid Lupus). But so far, about the best diagnosis I've gotten for my hand pain is about the same as yours: possible autoimmune neuropathy.
That said, I did start on a immuno-suppressant drug, CellCept, about 4 months ago and it has dramatically improved my hand pain symptoms. While my hand pain can still "flare" with overuse, cold, or stress, the pain has never been as bad as before I started on CellCept. While the pain is never "gone", it is currently far more manageable.
I have tried many other things, including diet changes and eliminations, but nothing except the immuno-suppresant has helped for me.
Best of luck, and if you find something that works for you, I hope you share it back here.
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2 ReactionsI have after much nagging on my part, finally been given the diagnosis of SFN caused by Sjogren's Disease. I started IvIg over a year ago thanks to a willing neurologist. I say that it took some months to help, so don't lose patience with it but I have noticed some improvement. It seems to be the only hope for me and I will likely be on it the rest of my life. But at least it helps. Do your own research even if you have to look everything up.
I had neuropathic burning and itch from the nerve supplying the skin segment around my ear canal. Likely post zoster neuralgia.
Rofumilast cream Zoryve was the only thing that worked .
Bit of a wild card but have you tried Reflexology ?
I had a burning itch on the side of my thumb for about a year . Couldn’t calm it.
Had to lose my thyroid (surgery ) I didn’t relate it to that but after surgery I have never had since .
Sometimes things like that relate to other parts of the body. Just a thought .
I looked it up when I realised it had disappeared and the reflexology chart had the spot which had troubled me for ages . I was very surprised !!!
Ive suffered from sjograns since 1989. Many things affected me with sj. But haven't had a doctor to help me with it. Now finally is called a disease and have clinical trials as well.
Thank you. Never knew of another person with sjogrens.
I suspect we are Legion.
I have had it for 4 yrs and it is getting worse - I don't have any answers. Drs keep pushing gabapentin which has not done anything.
At one point a Neurologist had bumped me from 300 mg gabapentin 3 times a day to 600 mg 3 times a day and added 25mg of nortriptyline. Did nothing, then he increased it to 800 mg gabapentin 3 times a day and increased nortriptyline to 50 mg. Still nothing but side effects started kicking in. On my own, I switched back to original 300 mg Gabapentin and discontinued the Nortriptyline all together. I have recently switched to Pregabalin 150 mg twice a day, worked up from 75 mg twice a day. Have you tried Pregabalin?