Hi,
I have been getting infusions for 6 years now; I started out getting them every 5 months, and I am up to every 2 and 1/2 weeks now. I have developed allergic reactions to many brands of IVIG after I am on them for awhile, and then have to change to another newer brand. I also have learned to be pre- treated with Solumedrol and Atarax, and Zantac, and have continuous IV fluids during the entire infusion. I also need to take vicodan as needed for the terrible headaches, for the next couple of days. The rate of infusion is also critical! I have learned to be my own advocate, and watch the machine; to make sure they don’t try to rush the procedure too fast… this alone makes a huge difference in how I feel afterwards.
I have learned the painful way to ask every time what brand they are giving me, keep a log, and take an active role in managing my treatment.
You will need to change and adjust your son’s treatment until he feels the the treatments are helping him, not making him feel worse!
Best of luck, Jo Marie

Hi,
I have been getting infusions for 6 years now; I started out getting them every 5 months, and I am up to every 2 and 1/2 weeks now. I have developed allergic reactions to many brands of IVIG after I am on them for awhile, and then have to change to another newer brand. I also have learned to be pre- treated with Solumedrol and Atarax, and Zantac, and have continuous IV fluids during the entire infusion. I also need to take vicodan as needed for the terrible headaches, for the next couple of days. The rate of infusion is also critical! I have learned to be my own advocate, and watch the machine; to make sure they don’t try to rush the procedure too fast… this alone makes a huge difference in how I feel afterwards.
I have learned the painful way to ask every time what brand they are giving me, keep a log, and take an active role in managing my treatment.
You will need to change and adjust your son’s treatment until he feels the the treatments are helping him, not making him feel worse!
Best of luck, Jo Marie