Reply To: Does anyone have more than one immune disorder?
Prior to the end of last year I did not receive any treatment for anything. Then, after my hematologist referred me to the immunologist, I was started on IVIG. The dose is 30g once every 4 weeks. As you stated, expected to be forever.
What did the immunologist do? He convinced me to start the IVIG due to the (he said) high risk and great variety of things that can go wrong with a compromised immune system with Igg numbers as low as mine.
It’s for the best if you ask your doctors what you want to know and listen for what they explain.
In my own case, one immunologist said don’t take IVIG, wait until you get sick! No thanks, how can I predict when I’ll get sick so the infusion center will have the IVIG on hand? Worse yet, if someone is sick, the Infusion Center asks that you not come in. A poor recommendation in my judgement.
On the other, I would wish not to be on IVIG forever. So would everyone else on the Primary Immune website I’m sure. I did stumble on a forum over there and it seemed to me some unlucky patients were struck by and stuck with ever re-occuring bouts of shingles. One example of a possible out of control condition when the immune system does not respond effectively.