So, short and sweet. Which works better IVIG or plasmapheris? How often? and cost?

Hi don't let this be your last question. This is what makes this board so enjoyable.

I am on my 3rd series of treatments of IVIG. Due to my age (70) they space mine out more than normal. So far I have had some improvement in my double vision but that's about all. We are not sure if it was IVIG or Imuran that caused the improvement. I still can't see well enough to feel safe to drive. As for cost of IVIG I'M not real sure. My insurance covers the cost. I will ask my wife she sees the bills that my insurance was charged. I have my IVIG treatments done at a Charlotte infusion center which is quite cheaper than a hospital would charge. I have heard hospital charges up to $100,000 for a 5 treatment series (normal) of IVIG.

I'm pretty sure my Neuro is going to try the plasmapheresis next, so stay tuned and I will give details. Likely in Aug or Sep
Mike

Re: cost: I stayed in the hospital six days and five nights for my course of IVIG (though I think it could also be done at home--they put me in because I was having trouble swallowing, and because it was my first course). The total hospital bill was $75,000. BUT: the total that my insurance company paid the hospital was $13,000.

The insurance company has contracts with the hospital and doctors. In the past, when I was uninsured (before I got MG!) I used to ask for the self-pay discount, and then I would get the price the insurance company pays. But they only do this for you if you ask!

If you are uninsured, many hospitals will write off your bill if your income is reasonably low.

Seeing the bills always upset me. My insurance company paid $500 for a speech therapist who came and watched me swallow once, and even more for an occupational therapist who gave me tips on how to conserve energy. I mean, the hints were humorous and all, but I could have gotten a better laugh for a dollar by renting a funny movie.

Abby

My first IVIG they offered to do it in my home but wanted an additional $3,200 out of pocket. I said no thanks my wife can drive me to the infusion center for about $10 in gas.

Thanks again all. I do have insurance so hopefully Ill be covered. So seems like IVIG is used more than Plasmapheris huh? Im just afraid. I mean so far, the IV's of medrol (I think thats what its called) seems to help. But I still try to talk neuro into oral steroids first (like right now). I worry that if I start IVIG, I will be doing that from now on....But I also worry that Im missing out. What if I could not only breath better but I could walk and use my hands normally again- I could drive!.....So much to consider. Thanks again

My neuro was worried that the insurance would balk at the IVIG, but I don't know if he had reason to be. As it turned out, I was admitted through the ER, because I was having trouble swallowing*, which is considered an emergency. If there are any insurance problems (which there may not be), it looks like it's easier to get the insurance company to agree in an emergency than just, you know, in order to treat your illness. "Trouble breathing" can also be considered an emergency, even if you don't feel like you're in any danger.

In other words, if your insurance company says they won't pay for routine IVIG, I bet they will pay for IVIG after you're admitted for trouble breathing.

My understanding is that IVIG is done by IV, but plasmapheresis often requires having a port put in. Ports are implanted surgically, under sedation and local anesthesia (but by "sedation" they mean you'll be asleep--you just won't be on a breathing machine). That's probably why IVIG is usually tried first.

*I found out that "trouble swallowing" can mean a lot of things! It didn't seem like an emergency to me. I was just having liquids go down the wrong pipe (a little coughing) about six times a day.

Abby

draggin'- I have had both plasmapheresis and most currently (every month) have ivig.

plasmapheresis is not usually used therapeutically as ivig is. it is used more in the idea of a crisis- ivig is sometimes used at the hospital for this, but from my experience when I was on a vent and when being admitted for a crisis multiple times it was plasmapheresis that works faster and is used more for instant results. I believe when I had it done a year ago multiple times it would be 2500 a session and 6 were required...


ivig- more expensive I believe. each bag is 6,000 then you have to pay for the nurse and infusion center. but it is over a smaller time
period. I have a nurse come to my house and do my infusions. my insurance pays for all of it, and I am very lucky for that. luckily my father has a great job w benefits.


if you have any questions let me know

Good to know. ER may be the way to go. Also try IVIG and save plasmapheris for crisis. Thanks

When I went to the ER, it was on the advice of my neuro, and he had called the staff already to tell him what was up, and that he wanted them to admit me. That helped a whole bunch--I didn't have to convince anyone that I was sick enough to be admitted.

To any myasthenic who does go to the ER and hopes to be admitted, I would recommend not down-playing troubles with swallowing and breathing. "I can't walk" means little to them. "I keep falling" means more. But "I'm having trouble swallowing" is an emergency.

Abby

Talked to my wife and I was charged $5,000 per bag (IVIG) by the infusion center. It usually takes 5 bags per course ($25,000). It is just a matter of having IV inserted and waiting 2 1/2 hours for it to drip out. Some people have side effects but my treatments have all been unmedicated and I got a slight headache a couple of times. It was boring but not bad at all.
Mike