OK, so I can't walk. The disease seems to be suddenly concentrated in my legs. My doctor says it's time for IVIG, but I don't want to be admitted, and my insurance company will only pay 80% for a nurse to come to me. The neurologist's office is looking into setting me up at a cancer center that I can visit each day. Can anyone tell me what that will be like?

Abby
softening up my kids to lend me their laptops so I can watch movies...

I've done it that way. you go into the infusion clinic and are sat in chair (mine reclined) and they start the iv then the ivig. it's quite simple it's the same process just not
laying in ur bed at home. it'll take the same
amount of time

I would prefer not having to travel, which will wear me out, but being able to sleep in my own bed is going to make a huge difference. The last time I had IVIG was in the hospital (six days). I think most of its benefits were canceled out by the extreme state of exhaustion the hospital put me in.

I am surprised that my insurance company will only pay 80% of home infusion costs. I thought I had excellent (private) insurance.

Abby

I had all mine done in the infusion center. They had cable tv plus movies to watch. They had a snack room and if you were there during lunch they provided lunch also. To have it done at home would have cost me out of pocket. Going to the infusion center was 100% covered. They were very nice and tried to make you as comfortable as possible. We have stopped my IVIG treatments to see if Imuran is working.
Mike

Thanks, Mike. Please keep us up on your progress. My need for IVIG means my Imuran hasn't kicked in yet (I've been on it less than five months). I'll have my dose upped soon.

I am going to have five days of infusions. They'll give me a new IV each day, right? Not really looking forward to the poking, but I can manage, I guess. I'm really happy not to do this as an inmate, I mean an inpatient.

Abby

well, Abby if you want to/are able to keep it in they will let you. personally
I hate having it in at home so I take out almost every time unless the time in between infusions is short. They should let you keep it in, they always asked if I wanted it in or out at the end of the infusion when I did it at the infusion clinic. they do serve some food and drinks to keep ya happy although I'm never hungry during it.


hope ya have fun

Abby;

Be aware of the profit motive with infusion centers. I have been getting infusions for 2 1/2 years and I am with my 3rd center. IGIV's are one of their most profitable.

The first one only offered water so I brought something to eat. They closed. They were in my Neuro's office and when the Neuro that handled MS patients left there was not enough paitients to keep it open. (Tysabri infusions.)

The second center I quit. They offered coffee, sodas and snacks. They were also getting more and more IG patients. When I started I was the only patient getting IG.

I sleep during my infusions. My second infusion last December seemed to last only 2hrs. and 20 min. In January my first infusion was 3 hrs. ( Normal) The next day, my infusion took 1 hr. and 50 min. I crashed for 5 days and never went back but they were very busy and my nurse was very sloppy that day. While she was poking me she dropped something on the floor and picked it up and continued without changing her glove. From the beginning I never thouht they paid enough attention to sanitry cconditions.

I am back with the first infusion center, (Healix) at another location. They have a formula they use that depends on the amount you are getting if it is not already dictated by your Dr. The amount of Immune globulin you get is based on your weight.

I'm 180 lbs. and I am on the pump now for 4 hrs. now.

So be observant don't forget to pretreat with Benydril and tylenol.

PRETREAT PRETREAT PRETREAT. Good luck:

Tony

Did I mention to PRETREAT Benydril and tylenol.

Tony

Well as for my Imuran they aren't sure if it has kicked in or the IVIG made my vision improvement. My neuro stopped my IVIG to see what happens.

My IVIG's were spaced over 3 weeks due to my age(70). When I got 2 in one week they left the IV in place which made the next visit so easy. Oh we called the infusion center 30 minutes ahead and told them we were on the way. That way they could call and order my treatment and it was usually there and ready when I arrived. That saved me a 30-40 minute wait for the bag to arrive.

Thanks so much. I really appreciate knowing what to expect and what to watch out for.

I'm getting the infusions in a cancer center that's connected to a hospital. By all accounts (well, I guess I mean by the account of a close friend, whose husband just spent a lot of time there) this is a really spiffy, compassionate sort of place. I will be bringing some snacks for myself, though, just in case.

I had the infusions last time without benadryl, and did OK. I will be taking some ibuprofen, though.

I'm having them at this center because my insurance would only pay for 80% of the cost for me to have it done at home. When I asked the private home-infusion company what that would be, they quoted me a very high number that is coincidentally identical with my out-of-pocket maximum. When I told them that I couldn't afford that, and would chose the center instead, they offered me a "financial aid program." I felt like I was buying a used car or something.

Abby