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IVIG every 3 months

papa Message
21 May 2017, 12:57 PM

I am the grandpa of Levi who in March of 2015 at age 2 1/2 was in ICU for 2 weeks with SCLS. He survived, thank god, but ended up having a fasciotomy on his left leg, He started out having monthly IVIG treatments but has now for the last year has them every 3 months and we are happy to say no episodes since his initial episode 2 years ago. Wondering if anyone else has been able to stretch infusions out - especially the children afflicted ?

aporzeca Message
21 May 2017, 05:45 PM

Welcome to our Community!

IVIG treatments for all sorts of diagnoses generally take place every 4 weeks or else more frequently, depending on the dosage and manner. For example, we have some patients who receive their IVIG every 2 weeks -- but then they receive half the dosis that they previously got every 4 weeks.  Look it up on the Internet and see, e.g., at

And the reason for this is that IVIG is a blood product, and as the body's own blood is renewed continuously, whatever IVIG a patient receives on Day One is diluted away each day after that.  Studies show that half of the dose received on Day One is gone from the body by Week Three or Four, and the remaining half disappears very rapidly after that.  (It's not a straight-line pace of decay.)  Therefore, in order for sufficient IVIG to be always present in the bloodstream -- namely, at least a half-strength -- patients must receive additional amounts by Week Three or Four.

In sum, getting IVIG every 5 or 6 weeks might potentially be justified if the initial dose is so powerful that the patient can do with just a tiny fraction of the original amount by Week Five or Six, but I don't know of any justification for giving it every 3 months -- other than for the insurance company to save money on Levi by letting him run on "empty" for a month-and-a-half.

But don't take my word for it.  Feel free to have Levi's doctor consult with an immunologist or else with Dr. Kirk Druey at NIH,   He's the world's leading authority on SCLS, and in 2015 he published a co-authored article on SCLS in six children, see

The authors concluded that "Four of our 6 patients were treated with IV or SCIG [subcutaneous immunoglobulins], and none had a further severe episode while on this treatment, suggesting that immunoglobulin prophylaxis (1–2 g/kg per month) is effective therapy for SCLS in children."  [The other two children could not tolerate the indicated dosis all at once, so they were switched to receiving an equivalent amount subcutaneously, over many more days, in amounts carefully designed to provide the same protection as 1-2 g/kg per month.]

monkeyracing Message
23 May 2017, 06:26 AM

Something to watch out for with IVIG prophylaxis is the possibility of a reaction 3-5 days post infusion. I've developed a very predictable rebound phase after receiving IVIG. It could be an immune reaction, but we never narrowed it down. In any case everyone reacts differently. I just react poorly.

I was getting dosed monthly, but it was making me ill like clockwork. Now I only receive IVIG as a means of dealing with an episode of SLCS. I generally insist on remaining in hospital for 5-6 days, as I know I am going to have a reaction to the IVIG. Ironically, more IVIG is the treatment prescribed and it usually straightens me out within a few days.