Autoimmune neuropathy treatment? Steroids or IVIG?

@ekraus2000
Hello,

I also have antiphospholipid syndrome (APS), along with von Willebrand disease type 2, Factor V Leiden, laboratory-confirmed adrenal insufficiency, and progressive skeletal muscle weakness.

I'm not a MD, but given the complexity of your case, it may be worth considering a comprehensive neurological evaluation. Neuropeptides such as substance P, bradykinin, and glutamate are involved in pain signaling and can contribute to central sensitization by increasing the activity of secondary nociceptive neurons, leading to enhanced pain perception. Substance P and other sensory neuropeptides are released from the peripheral terminals of sensory nerve fibers in the skin, muscles, and joints, where they can promote neurogenic inflammation and pain.

Depending on your symptoms and clinical findings, a neurologist may consider brain imaging, including evaluation of the hypothalamic-pituitary region if there is concern for HPA axis involvement, although MRI findings are often normal in pain disorders. Given your autoimmune markers, a consultation with a neuromuscular neurologist may also be worthwhile.

I hope you find some answers soon.

I have positive ANA, low positive on Early Sjogren's Panel, elevated CCP, positive HLA-B27 and symptoms of Sjogren's along with extreme weight loss. I had a liquid gastric emptying test in May that showed gastroparesis and just had skin biopsies this week to check for neuropathy due to the gastroparesis and symptoms of dysautonomia. The rheumatologist went through a list of options, including IVIG, there are some drawbacks with all of them. He wants me to try a very low dose of Cellcept to see if I can tolerate it. The black box warnings are concerning but according to my doctor, autoimmune related neuropathy is lacking effective medication. The advice to see a qualified neurologist is sensible, I would see a gastro neurologist if it were an option for me. Hoping you can get the clarity you need.

I have similar symptoms of progressive muscle weakness in addition to systemic sclerosis. I am SCL-70 positive, which is a confirmation test for scleroderma. My muscle weakness started after 3 years into diagnosis and post chemotherapy for SSC. Seems like chemotherapy made it worse.

My neurologist advised that either treatment with IVIG or steroids may work, but with 50% success rate. Rituximab is also an option after IVIG or steroids. Based on other panel discussions, IV steroids may be first line of treatment, unless there is strong indication for IVIG. It is hard to predict which patient will respond better to which treatment. I did lower EMG test which showed decreased nerve conduction in my legs. Paraneoplastic neurological autoimmune panel of blood tests came in negative. It was done at Mayo Clinic Lab - the disclaimer on test results say that negative test results do not mean that you do not have autoimmune neuropathy. My neurologist was considering IVIG, but suggested scleroderma specific treatments instead. I am taking Cellcept and do not see an improvement in muscle strength. But every patient is different. Trial and error a lot of times is a treatment process in autoimmune disease. Steroids and IVIG are first-line treatments. Cellcept can be used concurrently. Lower doses are generally safe.

I have autoimmune neuropathy and, severe axonal sensorimotor dysautonomia peripheral polyneuropathy, CIDP, CAN- cardiac autonomic neuropathy- my BP goes up and down every few minutes and I go between tachycardia/bradycardia. My body does not regulate body temperature.
I don’t feel my feet or hands. Why am I telling you this? I went through four left hip replacements and actebulum fx along with pubic ramus I keep fx due to avascular necrosis and I now have it in by knee. This is due my asthma and high doses of predisone.
My autoimmune diseases lupus, sojourns, MCTD and Hashimotos and now diagnosed with RA. I am on Panzyga every three weeks along 125 mgs solu medorol IV. I have a port.. The rheumatologist is starting me on Benysta through IV for the lupus. My sed rate is over 135. I have a lot of inflammation in my body. Panzyga has given me back a lot on my life. I am no longer wheelchair bound. There are days I can walk without my canes they wrap around both my arms. It has helped with the dizziness and the muscle atrophy. I grew up on IVIG from age 10-18. The research neurologist told me ( live in Texas went to Boston for answers research neurologist I saw was Dr Oaklander her mother was a research neurologist for pediatric neuropathy Dr Oaklander and her daughter both research neurologist) if I would have stayed on the IVIG that I wouldn’t be in the shape I am on. I see two rheumatologist one treats the neuropathy and the other found the lupus and other problems. It took the medical field from 2002-2025 to figure out what autoimmune diseases I had. I had the lupus rash took pictures but it took awhile for my labs to catch up but all these years my autoimmune markers were all high. Panzyga is for autoimmune neuropathy a lot of IVIG has a sugar molecule in it so be careful. It will raise your glucose levels. I did a lot of research as an RN and took it to my doctors to prove what I was telling them was true. My rheumatologist did not know Panzyga is also used for lupus and sojourns until I gave him my information. I often wonder if my childhood doctor knew about the lupus? It does not work on the first infusion. It took me about six months before it kicked in. I have been on it a little over a year.
What I have learned very little information on autoimmune neuropathy. Everything I have learned has to do with diabetic neuropathy and too me it’s a frustrating experience. I do my continuing education credits in neuropathy for my RN continuing education credits. I can finally write my name from the motor neuropathy ended up with tremors. Motor neuropathy says movement disorders. They need to be more specific Dr Oaklander told me they are not essential tremors nor do I carry the genetics for Parkinson’s. My dna-ds is positive for lupus. My C3 is low. I would not be able to take care of my son without it. He was hit by a drunk driver and has severe TBI and my other son born with congenital heart disease 30 has pulmonary hypertension and refusing a heart transplant.