IVIG at an infusion center?
 

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

By the way--they told me that my infusions would last from 1:00 to 5:00, which means I'm on the 4-hour schedule. So that's good. Thanks for the tip about calling ahead.

Abby

Mine were unmedicated and took 2 hours and 30 minutes.
Mike

I have always had mine at the infusion center at my neuro's office. I tend to get headaches from IVIG so I premedicate with a migraine med, tylenol and benadryl. I get 47g and infuse at a slow rate, 100, so it takes about 6 hours total. I'd rather be there longer than deal with the headache so I don't mind. My insurance company offered home infusions but it would cost me my out of pocket maximum so I declined. Having it at the infusion center just costs me a co-pay just like an office visit. I take snacks too and something to read, listen to or watch.

Hi, everyone. Checking in from the infusion center. I'm glad the insurance company insisted I do it here, because we still have no power at home! We lost power during the storm on Sunday, and it's still out. Plus, there are fourteen, yes, fourteen kids at my house. And last but not least, if I weren't here at the infusion center, I would be totally out of touch, because we have no internet and no phone at home.

I had great IV sticks on Monday and Tuesday, but Wednesday was sort of a disaster. When they finally got it in, they told me to leave it in for Thursday and Friday, but last night it was really sore, so I bravely pulled it out. I decided I'd rather go through the sticking today than feel like a patient at home all evening, night, and morning. Today, I got a pretty good stick. So.

No real side-effects. A few headaches, but ibuprofen takes care of them. Not stronger yet. Nice infusion center. Thanks for helping me know what to expect.

Abby

Abby glad it went well. All of mine went the same. I did get a couple of small headaches but nothing bad. Twice when I did get a boost it was 5-6 days after the last treatment. Hope you get a boost in the next few days.
Mike:hug:

I seem to be getting a boost from my IVIG already. Last time I waited two full weeks. This time it's only been five days. I am walking almost normally, and today I carried two mugs of coffee in my right hand--before, my fingers were too weak to carry even one by the handle.

I wonder why this one is working better than the last one (which I had in February). I suppose it could be that I've been on Imuran since April. Anyway, this is encouraging! I was just starting to think that the treatments aren't worth it, what with five days spent on the infusions, and the headache (which is now treatable with ibuprofen). I'm not an emergency case, since I don't have trouble breathing or swallowing. But we'll see how long this lasts me. It sure is nice to have some energy again. The cool weather may be helping me as well.

Abby

Hope it stays with you. Out of 4 IVIG treatments I got 2 boosts and both have stayed with me but part of it may be the Imuran. Only time will tell. Thank goodness I can drive again but best of all is I can play ping-pong again.
Mike