IVIG

Wow lucky you got approved. They wont approve this stuff for anyone, its def becuase your immunoglobulins are low. I have small fiber neuropathy and IVIG is the only treatment and they still give me a hard time.

My advice would be to take tons of benadryl and stay super hydrated day of the infusion. Youre going to get massive headaches for the first few months, like head splitting. Your moron nurse will probably tell you to take tylenol if you get headaches, and that you need benadryl the day of in case of a rash. This is hogwash advice. The benadryl is the only thing that will help the headache...youre putting a foreign substance in your body, and your body reacts to it. Amazing I had 3 nurses not one of them knew that.

Good luck

First time I got an infusion I got a 4 day migraine, it started the day after the infusion. It’s not really like any headache you’ve ever gotten before, it’s very unique it’s in the back of your head and your neck. Then the second and third times the headache lasted for a couple days. Now I don’t get them anymore. Just hydrate and use lots of Benadryl. I didn’t know about the Benadryl the first time, they just told me to use it the day of. Also hydration is key because IVIG is very viscous it’s requires a bigger gauge needle so you want your veins nice and plump so they can get in there. Finally, your first time, make sure you don’t go too fast. If you’re doing it at home sometimes those nurses try to speed it up to get out of there. 133-150 mL/hr no more the first time or you will get a bad headache day of.

Your body will get used to it though and you will be fine.

Post Edited (dcd2103) : 3/25/2020 5:15:32 PM (GMT-6)

Congrats! How big doses are in plan?

Mine is $17k/month. Expensive, but without it I will be in a wheelchair. And theres a shortage.

Post Edited (dcd2103) : 3/27/2020 10:31:32 AM (GMT-6)

My insurance WAS covering it. I'm so screwed, because they just pulled the plug. I have small fiber neuropathy. It belongs to a group of inflammatory nerve degenerative diseases which includes AIDP, CIDP, GBS, SFN, etc. Basically with the other 3, your body usually attacks the large fibers. W/ SFN, it attacks the small ones. They say that because there are other causes for SFN like diabetes, the FDA does not approve IVIG for "on label" usage for SFN (otherwise people w/ genetic or diabetic or chemo induced neuropathy who IVIG wont help will of course want to try it and waste tons of money). So for people like me with autoimmune SFN they approve it "off label", which allows them to pull the plug willy nilly.

In my denial they said that IVIG is only approved for AIDP, CIDP, GBS, CIVD, Stiff Person Syndrome and a couple of others. I dont know how people w/ Lyme are getting this approved, I think their drs are lying because there's no way an insurance company is going to approve this for lyme disease. Not happening.