IVIG can usually be approved for neuropathy (regardless of the cause)
IF you have documentation like positive EMG/NCV or skin biopsy showing small fiber neuropathy. IVIG is not normally approved for Sjogren's alone.
I too have neuropathy (both sensory and autonomic) from Sjogren's and received IVIG for many years. My initial approval was based upon selective IgG deficiency (but it helped the Sjogren's neuropathy) and later received it under a neuro diagnosis alone.
IVIG is not a instant fix. It takes time to see results. But I did find it helpful.
It doesn't sound as if you would have any problems getting the treatment approved with your severe case/ neuro symptoms, which certainly they've documented.
Hopefully they will approve you soon so treatment can begin.
Quote:
Originally Posted by POTSgrrl
Hi guys and gals,
This is my first post on this site, so apologies if I do it wrong.
After being mostly bedridden for the past 20 months, I was just diagnosed with severe autonomic and sensory neruopathy caused by Sjorgen's Syndrome. Cleveland Clinic wants me to get IVIG right away, since the sooner you start it the better it works (so they tell me). I have Blue Cross Blue Shield insurance. I am wondering if anyone else on here has been successful in getting their insurance company to cover IVIG for Sjorgen's related neuropathy.
I am so scared they are going to deny it and I will only get worse. I am already bedridden from the autonomic problems for about 20 months, my hair is falling out and I have lost 60 lbs. because I can barely swallow without choking on food. Those symptoms don't even bother me as much as the severe breathing problems I am having. I would literally cut off my legs if it would help me breathe better. It is terrifying not being able to breathe, and not having anything that helps it (oxygen, asthma drugs, etc. unfortunately do not help the breathing). Not trying to be a complainer, because I know everyone on here has major healthy problems too. Just wondering if anyone else is going through the same thing as me with Sjorgen's triggered neuropathy. I already have a chest port for my daily 1 liter IV saline (to help minimize my low blood volume, caused by kidney/nerve damage - also probably due to the Sjorgen's), so I am ready to get hooked up to that bag of IVIG right now. My docs are telling me it's going to be a long fight with insurance and that I may not be approved.
If anyone has had IVIG covered by insurance for Sjorgen's neuropathy, please let me know.
Thanks!
POTS Grrl
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