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Old Sun Nov 23, 2014, 10:53 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Hi Barbara - FYI there is some info about the IVIG therapy here:

http://primaryimmune.org/treatment-i...bulin-therapy/

Occasionally I have a slight headache the next day but it's not even bad enough for panadol. The only time I had a bad reaction was when I was travelling and had an infusion in Darwin which was run too fast (280 dpm) - my normally very low blood pressure shot up to 180 and I was about to black out when I called for help. Because IgG is quite viscous 240 dpm maximum is the standard. I have 60 dpm for 15 min, then 120 dpm for 15 min then up to 240 for the rest of the time and that works well. The dosage is calculated according to your body weight.

Again I highly recommend that your husband give it a try if you can gain approval from his haematologist. After 2 years I tried to have a 3 month break just to see what would happen, but the 3rd month I started getting infections and felt as unwell as I had before I started. My globulins had dropped to low levels again. My specialist said that hypogamma doesn't go away and I can expect to need 4-weekly infusions for the rest of my life.

I look forward to hearing how you get on with this!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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