Hi there. I’ve received IVIG infusions at home every 3 weeks for just over a year. I’m not the typical neuropathy patient. I’m 41 and in good shape. I don’t have any of the “smoking gun” co-morbidities. My neuropathy started in one toe, occurring occasionally. It spread to other toes, then both feet and continued to climb up my feet. My Rheumatologist referred me to the Ophthalmology & Neurology Clinical Department at Michigan State University. There they conducted all of the objective tests, most of which came back normal. I also had DNA sequencing through INVITAE which showed genetic mutations. Those mutations hadn’t been seen before so it’s unclear whether they are pathogenic. A high quality lab test revealed I have 3 times the normal level of the TS-HDS antibody. A hole punch biopsy confirmed Small Fiber Neuropathy, and that I had fewer sweat glands than normal.
My doctor hospitalized me for 5 days for my first infusion, but then my insurance wouldn’t cover it; citing the reason, The FDA doesn’t approve of the medication to treat my illness. That’s part of the problem- this is a rare condition, so my specific illness doesn’t have any known treatments or cures. It took doing due diligence and researching scientific articles and clinical trials on my own to assist my doctor with the appeals to get my insurance to approve the IVIG Infusions. It took 10 appeals! The company I infuse with is Optum Health. I highly recommend them. Their nurses are knowledgeable and the pharmacy is accessible for questions. My nurse gives the advice to other nurses who provide at home infusions not to “pool their patient’s medication.” Each batch is sourced from thousands of donors and has a LOT Number. It’s important to keep a daily journal of your symptoms so you can gauge the efficacy of one batch vs another.
I don’t think the outcome or benefits of IVIG are one-size-fits-all. I didn’t notice any dramatic changes for several months. I first noticed how terrible I felt when I was about due for another Gammaplex infusion. After a year of treatment I noticed less fatigue, but the fatigue wasn’t eliminated. The neuropathy, which was aggressively progressive, stopped spreading and was contained to my toes only. I had less mental fog and more energy. The stinging, burning sensations were markedly diminished, but the itchy, pins and needles remain.
I did have a really bad infusion once which caused me to be very sick with flu like symptoms. I felt mentally detached from myself and very depressed.
This can happen, and reactions are more likely to occur if you have an A blood type because the medication contains anti A antigens. I would have your blood type tested before you infuse, even though you’ll be told it isn’t relevant. Blood typing after you infuse isn’t as reliable due to the amount of donors, so a hospital will take extra measures if you needed to receive blood, like in the case of surgery. I’m currently waiting for records from a surgery I had in 2012 to learn what my blood type was then, because I think it has changed and now tests to be O positive. (You can purchase a professional blood typing kit for as little as $10 on Amazon.)
My doctor prescribed “pre-meds” to be taken just before an infusion. These are just Benadryl and acetaminophen. To reduce negative side effects directly after an infusion it’s really important to stay well hydrated. This will help lessen the feelings of nausea, headaches, body aches, and dizziness. I highly suggest drinking coconut water and eating avocados the day of an infusion.

I have developed what feels like new but mild neuropathy in my hands and forearms. My doctor explains these sensations can occur as a result of the nerves healing. In my case, given the amount of time I’ve been receiving infusions, my doctor thinks we should switch gears because my body is attacking itself at a faster rate and more radical measures may need to be taken to prevent the attacks spreading to other organs.

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