Starting IVIG Loading Dose

    • May 16, 2017 at 2:05 am

      Hello again,

      Thanks to all who responded to my post asking if I should start IVIG. I decided to try a loading dose to see how I tolerate it.

      Unfortunately, I cannot do it in my home like I was planning to because my room mate feels it is unsanitary due to her pets, pet hair, dust, etc.

      This makes things a bit harder because I have to arrange transportation through my insurance, as I do not drive and I am certain I will not be strong enough to take public transit after the treatments.

      I will have a five day loading dose for five hours a day and then once every three weeks after that.

      What really swayed my decision is that I have begun to have intermittent/random double vision. I first had the Miller Fischer Variant of Guillain Barre Syndrome at age eight. This was how it started.

      I have also started college, and hope to continue during these treatments. It is my goal to get a port because my veins are horrible and I feel these treatments will be around for a while. It usually takes a few people to start an IV in me!

      If anyone has any stories about their loading dose, how IVIG helped them, etc., please respond.


    • May 16, 2017 at 9:33 am

      Liam, I was having horrible symptoms before I started IVIG — the worst being jolts of nerve pain down my legs that were bad enough to make me grab onto things to keep from falling. The first round of five infusions took away the nwrve pain entirely. Such a relief. I’m three infusions into my third round of five. I have severe nerve damage in both legs, and my neurologist didn’t even hold out hope of getting my legs back to normal. His goal (and mine) was to prevent loss of function from spreading to my arms and hands. Yet I am regaining strength in my legs! I walk with a cane all the time. My balance is still bad, but I’m improving so much that I have a lot of hope for the future. Because I am also severely immune deficient, I will take IVIG every month for the rest of my life. It’s a nuisance, but it’s worth it! After all, the many people I know with diabetes take insulin every single day and don’t grouse about it. They’re just glad to be alive, and so am I.


    • May 17, 2017 at 1:20 pm

      I just got a copy of my hospital bill for my five days of hospitalization for getting IVig. The only other things done were a brain CT before doing a spinal tap. The bill was close to $300000! When I got to the hospital, they asked for almost $1400 up front before starting treatment. I expect the insurance to pay this, since it was all pre-approved, taking four very long months for that to happen.

      Do you have massive co-pays every time you have an infusion? My follow up treatments have been one five day course of Prednisone and I am on day five of six day of a MedrolPak now. Since that only costs about $20, I am sure that makes the insurance company very happy, but being diabetic, it is doing horrible things to my blood sugar levels. But I am stronger, but th Prednisone wore off in a couple of weeks.

    • May 17, 2017 at 4:02 pm

      I’m on Medicare, and have Part D drug insurance. For my first month of IVIG (March of this year), my co-pay for the drug was almost $4,000. That put me into and out of the “donut hole” or coverage gap, and I went straight into catastrophic coverage. Now my co-pay for the drug is less than $1,000 a month for the rest of the year. (Next January I’ll have to pay the $4,000 again.) I have to pay for nursing care out of pocket — another $200 a month. Medicare doesn’t cover home infusions, and the infusion centers around here all use Gammagard, which my insurance won’t cover. I get GammunexC, the only infusion drug FDA approved for CIDP, but no infusion center will give it to me because they have contracts with the company that makes Gammagard. The nurse comes to my house on any schedule my doctor prescribes. My total out of pocket costs for one year for the med and nursing together will be about $23,000. I’ve heard that infusion manufacturers give price breaks to people who need help and apply for it, but I’m afraid I don’t have any info about that. Perhaps someone else does.