Has anyone had IVIG Infusions for Neuropathy?

@rwinney Yes, she submitted the prescription for IVIG a couple days ago so I’m sure it will go back and forth quite a few times with insurance, but I’m not giving up, we will get it approved!! It’s a longshot but we have to try something more aggressive like this since he’s only 15 years old. 🤞🏼🤞🏼

Yes

@katec thats good. What other meds have they tried for your son?

@arcticmark Thanks so much for your reply! I’m glad you have found some success with IVIG. I know that IVIG is generally only for those with an identifiable autoimmune disease, so since my son doesn’t have any indication of autoimmune I’ve been told IVIG is a longshot. But I want him to try it since it’s really the only treatment that has shown to reverse SFN in some cases. His doctor is prescribing a 3 month trial so now we are just waiting for insurance. I’m expecting an uphill battle with insurance, but our doctor is terrific and knows she will have to persuade them to let us try this treatment. I’m hoping that my son’s age (15 yrs old) will help with our case. Honestly, he’d be over the moon if he could get ANY kind of relief and live a more normal teenage life! Thanks again for responding!!

@rwinney Yes, she submitted the prescription for IVIG a couple days ago so I’m sure it will go back and forth quite a few times with insurance, but I’m not giving up, we will get it approved!! It’s a longshot but we have to try something more aggressive like this since he’s only 15 years old. 🤞🏼🤞🏼

There are attorneys that are now specializing in taking on insurers on behalf of patients to get IVIG. Not sure where you are based but https://www.rosenfeld.com/attorney-profiles/Mala-M-Rafik.html are good attorneys in Boston who do this. I have never used them, but they have a good reputation, so this isn't an ad but you can probably call and ask if they know attys near you who do this.

@albiet there have been many with no success. Most recently we have tried oxcarbazepine, Nortriptyline, Gabapentin, Lyrica...there are many more like creams, and even a DRG stimulator, all making no difference in his pain level.

@arcticmark I know it’s going to be a battle with insurance, but I’m ready! And thank you for the info on the lawyers, I had no idea there were folks who specialized in this so I will definitely keep their info! I really appreciate it!!

@katec

I hope you and your family, especially your son, were able to enjoy the Christmas season.

Jim