Ivig

[jpjd59]

Can anyone tell me if (and how) they have had IVIG approved through their insurance company. My daughter has POTS and has recently tested positive for Lyme. A few years ago her neuro tried to get IVIG approved and it was denied. Any suggestions would be appreciated.

Thanks!

[arizona girl]

It depends on the diagnosis on whether IVIG can be approved by insurance. Pots is not yet approved, nor is small fiber neuropathy. CDIP a form of polyneuropathy is. There is an FDA approved listed of illnesses that are approved for ivig. It is being used off label in research trials for many illnesses. I don't know about lyme, but lyme has it's own combined antibiotic treatment plan to kill the bacteria. Lyme though can be suspected of causing symptoms of dysautonomia.

I do get ivig, but it is approved for my immune deficiency CVID and my higher dose is treating my neuropathy off label. If you have her total quantitative immunoglobulins done and sub igg panel, she may qualify for ivig if those numbers are low. It wouldn't hurt to have them done.

[Clb75]

I have CIDP (autoimmune based polyneuropathy) and was approved for IVIG because it's an FDA approved treatment. Pots is not one of the FDA approved illnesses for IVIG, and even though it's suspected to have an autoimmune component there still is not enough research on it yet. You could try a doctor to doctor review or appeal with your insurance but would have to show that all other treatments have not shown enough improvement and that IVIG would be expected to help. I will say that I had IVIG for 2 1/2 years before suddenly getting sick with POTS in December. While it helps the CIDP symptoms, It did nothing to prevent the onset of, nor has it helped improve my POTS symptoms.

[Lethargic Smiles]

I think IVIG is primarily helpful in POTS cases where the cause is nerve damage from autoimmune disease. I could be mistaken though -- there isn't much research on the topic!

[RichGotsPots]

I have been trying to get ivig for almost 2 years now with 2 different insurance companies and 3 different doctors trying. It's very very hard. Most insurance companies list the approved illnesses to get it. I know ppl whose doctors just picked one of the illness on the list and got it. Some have gotten low doses of it with a primary immune deficiency. Good luck