SC Ig Question

[hlh]

My father is a 72 year old man with a spinal cord injury (paraplegia and neurogenic bladder) and lymphopenia and specific antibody deficiency. The immune system problems were discovered late in life, but fortunately he hasn't had too many respiratory infections. So far, he has been able to hold off prophylactic antibiotics and IVIg.

But now he has had 7 urinary tract infections (UTIs) in the past year. His immunologist wants to do a "trial" of IVIg for 6 months.

I was surprised when the doctor said he would not start with IVIg infused in the clinic (to watch for side effects and figure out the dose etc..). Instead, he would start my Dad immediately on SCIg. It would be done in the home and the nurses would come out to infuse it. When my father asked if he could infuse it himself, the doctor said "No! The nurse will be there the whole time. You are at risk for infections and could have a reaction..."

So I was curious..... Did any of you start with SC Ig right away? Is this a good thing? I asked if any tests to check blood levels would be needed and he said no. The doctor didn't mention any other details/recommendations and hurried out of the room.

Also, do any of you have a nurse come to your home every time to do the infusions?

I thought most people learned to do the SC themselves. But maybe because my father is older and has a lot of other medical problems.... maybe the doctor thinks he shouldn't do it himself? Honestly, I am quite relieved that a nurse may come every time, as I definitely do not trust my father to do it by himself for many reasons. I would have come to his house to do it for him.

Thanks for your help.

[marksmom]

Hello - Mark started on IVIG as it was before subQ was used here in the US. He transitioned to subQ when he was 7. They did the initial dose in the clinic/hospital setting in event of reaction. Then, we had a nurse come once or twice to teach me how to do it. Now I do all of his infusions. When they switched Mark's brand of subQ, the first dose of that was also administered in the clinic/hospital in event of reaction. All doses after the first were done at home.

Is this doc an immunologist? Because they should be checking his counts. It seems they should have a baseline before they start therapy, and then routinely tested to make sure his IGG levels are sufficient with therapy. Mark's counts are taken every 6 months or so. Are you from the US? You can contact IDF for referrals for immunologists in your area (primaryimmune.org). I would maybe do more research on the booster IVIG dose/ first dose administered in clinic/hospital setting (not home)/ monitoring of his antibody levels. Those three things kind of stand out to me, but I'm not an expert.

I hope the IGG helps with your dad's infections.
Rachel
Mom to Mark, 13, CVID

[hlh]

Hi Rachel,

Thank you so much for sharing your experience. It is very helpful.

My father's doctor is an Immunologist. We are in the US. Amazingly, my Dad's doctor is quite senior at the major teaching hospital, and used to be the head of the National organization for Immunology. But he is still a little forgetful and sloppy. So I do feel like I need to do more research for my Dad....

I was very surprised when he said the first dose of SC Ig would be given in the home. I would prefer that my father was in the clinic/hospital for his first dose, especially because he is older and has so many medical problems. But I don't know what is normally done when you start SC Ig. Hoping someone will post to let us know if they started SC at home too.

My father's Immunodeficiency is probably not as severe as Mark's. His normal Ig levels are always within the low normal range. My father's problem is that he doesn't make a lot of lasting antibodies when you challenge him with the Pneumovax vaccination. But I pushed his doctor to re-check his labs (including his pneumococcal antibodies) at the appointment, and reminded him to recheck the IgG, IgA, IgM counts too. My father hadn't checked his pneumococcal antibodies in several years. I have no idea what is common. He usually just checks the lymphocytes, which are always low for my father too.

Thanks again for your good wishes. I hope Mark is doing well, and "grows out" of his CVID. I read this can happen....