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My 10yo DS has had 11 IVIG treatments at Dr. B's office. We saw huge gains after IVIG #2. I'd say DS was 95% better but IgG levels were only slowly improving. During this time, October through December we'd see/hear mild vocal/motor tics but nothing like onset at 4 years of age.

 

Since 1/2013, we've seen a slow but steady decline. I'm wondering if it's due to switching from Gammagard to Octagam.

 

I'd love to hear experiences of others who have made the change from Gammagard to Octagam. Thanks!

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ask for gaumunex. I attended a immune deficiency conference - and the attendess - that were both Primary immune deficient and secondary immune deficient adults - mentioned that gaumunex has a reputation as being easier to tolerate. Most of these folk have been taking IVIG for many years.

 

DS had gaumunex first time - he had about 2 days of the migranine and nauseas, and it was bad. BUT the second IVIG he had Gammaguard - and it lasted for 2 FULL WEEKS - if I didn't wake him in the middle of the night to give him advil (this was 10 days after the IVIG - I I thought it might be safe to sleep through the night ) he woke up vomiting with a migraine (and once that starts it hard to get in front of the pain)

 

You can also ask for prednisone before and after - which we had a 2 pills after each time (second time didn't help much, I think he threw them up).

 

Good luck and let us know if it helps.

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The infusion center that my daughter goes to has just recently switched to Octagam as the product on hand in the pharmacy. (Its a hospital outpatient center). The nurses told me that it currently is only available in a 5% solution which means the total fluid volume to be equivalent to the same dose of the 10% solution is doubled. I had her immunologist order what she had already been getting w/ no substitutions, so she didn't have to switch brands. She gets Privigen right now, which she tolerates better than the Gammagard that she used to get.

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  • 3 weeks later...

My son gets HD-IVIG every 4 weeks - we use Gammaked, which is identical to Gamunex. Octagam is stabilized with sugar, some other brands are not. Here is a good chart comparing each brand:

 

http://www.bdipharma.com/Comparison%20Chart%202013/Intravenous_Immune_Globulin.pdf

 

Lots of people post that their children have side effects from IVIG. My son has never had nausea, vomiting or headaches with his monthly IVIG treatments. Our doc also does not use steroids.

 

Instead, our doc pre-hydrates before each infusion with 400mg Mag Sulfate/25g Vitamin C. We also dose 600mg Ibuprofen every 6 hours.

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