SubQ with low/no IgA?

[liverbird]

Who here has low amounts / no detectable levels of IgA and gets SubQ treatment? And if this is the case, what is the name of the product you use? My doctor does not want to move me from my IVIG to SCIG because I have no detectable levels of IGA and is scared I will get bad reactions due to this. I currently get Gammagard S/D since that is a product with very low IgA.

[glowing]

Hi. I was told that I have very low IgA but I've been doing SubQ with SUBGAM for about three years now. I've been fine but of course we are all different and I know so little about treatments that I couldn't encourage, or discourage you regarding change.

Best wishes to you.

Glowing

[kane18]

Hi

I have low (almost negligible) IgA levels and take subQ. I am on a product called Hizentra and take 50ml a week. I have had no side effects using this for 3years.
Hope this helps

Hannah

[jillian93]

Hi liverbird,

I have CVID and the same problem. My doctor seems to think it's not an issue? I'm aware that IgG replacement therapy is for just that, IgG's, but I can't help wondering that it should also be helping my IgA's?

I have not yet found any kind of product to use. I have been doing weekly subQ infusions of Hizentra for almost two years now, and my IgA level has remained the same, or more so, gotten worse.

I'm sorry I don't have any solutions, but I wholly empathize with what you're going through. I will make sure to find you if any solutions come my way!

Jillian

[marksmom]

Hey Liverbird,
Mark has no detectable IGA, and he's never had a problem with subQ. He was on vivaglobin when it first came out until it was replaced by hizentra...he's been on hizentra now for a few years with no problem. Overall he was transitioned to subQ 8 years ago and never had a problem. The first subQ infusion they did in the hospital to monitor closely for reaction, and when he switched to Hizentra they monitored the first dose in the clinic for reaction but he didn't have any. Prior to this, he did 7 years of IVIG. We like subQ, and best of all, he's healthier with the more consistent infusion levels.

Jillian - IVIG will not improve your IGA - it has no impact on IGA or IGM. Some people just have no or very low IGA and there is no replacement therapy, although some do well on antibiotic prophylaxis. Low/no IGA leaves your mucus membrane areas (intestine, sinus, eyes, etc) more susceptible to infection. Of course, so does no IGG.
If you're newer to this, I recommend a couple resources for you that might be helpful to you as you are on this journey (these are US based) -
IG Living magazine (IGLiving.com)
Immune Deficiency Foundation (primaryimmune.org)
National Organization of Rare Diseases (rarediseases.org)

Best wishes!
Rachel mom to Mark, 15, CVID

[liverbird]

thanks all, I'll be starting on Hizentra in a few weeks!