IVIg Infusions for autoimmune neuropathy

I haven't had IV1g influsions. Are her kidney function tests good? IV1g can impact kidneys. My polyneuropathy is still early and is associated with MGUS and celiac. I assume by elevated proteins that your mother was also tested for MGUS (monoclonal gammopathy of undetermined significance) and had blood electrophoresis tests. My IgA, IgG, and now IgM levels are elevated because of light chain kappa MGUS. Some of my plasma cells are L-shaped instead of Y-shaped. The deformed L plasma cells (sticky proteins) attack the peripheral nervous system, and can cause a host of symptoms.

If you head to the Neuropathy support group on Connect, there are some discussions about IVIG. Recently, I received a reply from @efgh1020 and others there who shared their experiences recently with IVIG.

I haven’t tried it yet, so in a similar boat to you and your mother. Wishing you all the best.

Hi @kayabbott , we are very new to this. So I am trying to research as much as I can about what is happening to mom. This debilitating illness started to snowball after she started Jardience. Her kidney function is good. I don’t know what MGUS is, but she was checked for celiac disease and that’s not an issue. I have to check all the tests that were done to see if those you mentioned are there. If you don’t mind me asking, what are your symptoms? Thank you for responding.

Neuropathy has many causes and symptoms. A primary one is diabetes (which I don't have). Considering the rapid onset after starting Jardience, have the doctors checked for interactions with other meds or tried switching to a different medicine? My symptoms are mostly loss of feeling in my hands and feet that is progressing slowly. I've had polyneuoropathy for around 10 years and it hasn't impacted me much (yet). I try to slow the progression through diet and exercize. If you have a medical background you can look for research papers on ResearchGate or Fed. Govt sites (all NIH-funded papers are online now). There are so many autoimmune diseases, and most doctors don't have much knowledge about them and their complex presentations.

Since this is a deteriorating condition, which came after taking Jardiance, report these side effects to the FDA at 1-800 FDA-1088.
I have had IVIG without incident for what was diagnosed as autoimmune related neuropathy, but it takes time to get it rolling through the medical pipeline. This needs a more accurate and specific diagnosis in my lay opinion.
Tick-borne illnesses should also not be ruled out.
I hope you get better answers for your mother. She deserves them, and so do you.

Thank you for the number. There is still no specific diagnosis for her, but she is getting weaker. How many sessions did you have? I’m concerned about her immune system during and after treatment and if it doesn’t work.

Mom was taken off Jardience and then Tradjenta. Now she’s on insulin. The baffling part is that she has no physical pain or numbness, just weakness. We are still waiting to see the physio doc. They’ve been backed up solid. We do little exercises to make sure her muscles and nerves are staying awake.

Thank you. All of this surely makes our heads spin. We are searching for answers and good solutions to match her “mysterious” condition. I will head over to the Neuropathy area.

I began treatment in Feb. 22 through September 22, and restarted again in Feb. 23 through till now. I am currently in an infusion week. (The break in treatment was because of a fall from a transport chair that resulted in broken legs—unrelated to the infusions.)
The infusions are to ramp down the inflammation caused by an autoimmune reaction, and at this point to keep that at bay.
Are you near a teaching hospital, where you might get a team to help with the diagnosis?

To Michc: Please have them look hard for Sjogren's Syndrome. I have just been diagnosed with it and have been researching it extensively and I see just about all of the reactions you mention. It is not just a dry eye and dry mouth disease. And infusions of IgG are supposed to help at least some it. Right now I am getting off pred (I have had PMR) and am on plaquenil and Low Dose Naltrexone. Feel free to contact me if you want more info. Thank you for being her advocate.