Regarding the pump pressure, you will find the rate that works best for you. I believe they will start you at a very low rate until they figure out what rate they can safely run you. When I first started 8 years ago, they ran me at 50 units/hour and gradually took it to 125/hour. As time went on, I gradually increased to 200/hour, but over time I started having mild headaches after treatment. I now have them run it at 175/hour maximum and pretreat with benedryl and tordahl (an amped up aspirin) in my IV. Since I use a high dose (1 gram/kilogram of weight) twice a month instead of a lower dose (.40 gram/kilogram of weight) 5 days in a row monthly, the infusion takes about 6.5 hours. I get the same dosage overall, just handled differently. You will need to work with your doctors and infusion nurses to figure out what works best for you. I believe what you start with is just that, a starting point and your dosage and settings will change over time.


Good luck!

IVIG veteran
 

Hi Kathie,
I have Inclusion Body Myositis [too rare for many doctors to know about and no remedy] and Non-Hodgkin's Lymphoma, besides too many other things for this 77 year old person to remember. I am currently having IVIG infusions once a month for cellulitis, for arthritis, and to build up my immunity for the IBM and the cancer. The infusions I receive are generally tolerated quite well, although I have had reactions so I am given Tylanol in pill form, and Benydryl added to the infusion before they start the IVIG flowing. I have a port so they don't have to stick me so often [I am not a lover of needles!]. I receive the new version of chemo for the cancer every 3rd month. Those infusions generally take 6-7 hours. That can be a long day. So I am well versed in visiting the Infusion Center, called the Outpatient Pavilion here.

Generally you will feel tired but okay after the infusion. I did have a high fever after one of the infusions [103degrees], and spent 3 days in the hospital while they tried to figure out what caused the fever. No definite proof pointed to the IVIG, but that was the listed cause. Generally, though, I feel okay afterward. Unless you are hankering for a few days vacation time, and this certainly qualifies for a bit of sympathy, you should be fine to return to work right away. I have gone out to lunch a fime or two following the infusion, so think positive thoughts.

Take something interesting to read or to work on with your hands or a good movie to watch that you have been wanting to see. I have taken my laptop a time or two, a DVD player and a movie, current magazines, or some crafting I like to work on.

The important thing is to not worry about what is going into your veins, but to concentrate on the positive effect the infusion will have on your disease. Positive thinking is a powerful force as we battle the illnesses that plague us. Tell everyone to keep you in their thoughts and prayers, and keep yourself there, too.

Many good wishes to you as you continue the process, and a hug from an IVIG veteran as well.

Annie B.