I am interested to find out if anyone has ever stopped taking the IVIG treatment after being diagnosed with CVID? My doctor would like to try this, however he has never treated anyone with CVID.I have been receiving the treatment for 14 months.
Jo

According to some of the literature, about 15% of people with primary immunodeficiencies recover their normal immune function on IVIG and don't need it anymore. In my opinion, this is because many physicians and insurers select patients for IVIG therapy based primarily on the outcome of vaccine challenge studies. The principle "benefit" of vaccine antibody challenge testing is that it reduces the number of patients who would otherwise be eligible for costly IVIG therapy.

The problem with vaccine challenge studies is that don't predict which patients get sick with those diseases, particularly pneumococcus. Also, the assessment of "normal" antibody formation responses to vaccine challenge is based on a rule of thumb, not on any objective findings of what a "normal" response actually is. And, because the pre-vaccine and post-vaccine antibody test interval is 2 weeks to a month, this kind of testing cannot reveal antibodies that fade away instead of enduring. Because vaccine challenge tests are so inherently unreliably, doctors and insurers have a ready-made excuse to pull patients off treatment and .... SAVE MORE MONEY. And if you get sick again off IVIG, then you will have to re-prove you have this condition and the insurers will .... SAVE EVEN MORE MONEY at your expense.

WHile you are off IVIG waiting to see if you are one of the 15%, to justify resuming IVIG therapy, you may need to prove by means of objective evidence that you have not just one kind of bacterial infection, but several and not just one bacteria infections but viral and fungal infections also. I found it useful to begin by proving I suffer recurrent "opportunistic" infections everyone agrees people with normal immune systems don't get on a recurrent basis. These include HHV6, candida and histoplasmosis, among others.

Most doctors don't want to face down the third parties that pay for IVIG be it the government or a private insurer. To evade that problem, I saw lots of doctors and asked each one to order just one set of tests. When I was finished, I took the results of all the test back to all the doctors. Then ALL of the doctors I'd seen had to agree I had CVID and that IVIG, the standard of care for CVID, is medically necessary for me.

ankaw

I have XLA (absolute lack of antibodies), and I have stopped therapy once for three months.
I was ok, but in retrospect, it wasn't a bright move.
IV-Ig is good stuff, it is actually healthy, even for "normal" people.
If you can keep taking it, better stick to it.

E.
Dardamel@gmail.com