Capedeb - Hypogammaglobulinemia and IVIG/Insurance

[capedeb]

Any suggestions to boost immune system when your Health Insurance refuses to pay for IVIG Treatments? I am in this situation now and am at a loss. Was so encouraged to finally have a name for my "condition" and a helpful treatment - now what?

[elained]

Capedeb, is the name hypogammaglobulinemia? Just curious.

Hugs, Elaine

[capedeb]

Yes, Thanks, should have specified.

[elained]

Capedeb, as I understand it HYPOGAMMAGLOBULINEMIA is a description of your laboratory results.

This description just says: One or more of your antibody levels is below the standard range when tested.

Without adequate additional confirming evidence, the description is all that can be done.

The process of assigning a diagnosis to the laboratory result of hypogammaglobuinema requires extensive evaluation of all of your medical history, your other medical conditions, and the results of other tests, such as the pneumovax challenge.

I had been so HOPING that I would be found to have HYPOGAMMAGLOBULINEMIA without any further diagnosis. Since I didn't have a history of severe illness, I expected that I would have no problem with the Pneumovax and that my low levels of immune factors were not negatively affecting my immune response at the level that required IVIG.

That seems to be what was found for you.


If there aren't enough co-factors to establish a PID, the status then is one of watching and waiting, and treating any infections with approriate antibiotics. The description in your chart remains Hypogammaglobulinemia.

Again, I expected this result for myself, until the results of the Pneumovax were anaylsed at the end of July, 2013.

Unfortunately, I had only one normal response out of 21 to the Pneumovax, and the decision was made to move ahead with IgG treatment. The status in my chart changed from Hypogammaglobuinemia to CVID.

It isn't an easy treatment, my immune system is so defiant that it requires constant Prednisone to allow me to finally tolerate the monthly IVIG after I couldn't tolerate the 11 Subq influsions tried this past fall.

I am sure your doctors will continue to follow you, and to test your immune system. It is highly possible that CVID, or another PID diagnosis will emerge at a later point.

Many who post here, who are on IVIG or Subq continue to battle infections, including pnemonia and hospitalizations. Even IVIG doesn't address all of the deficiencies, especially a deficiency of IgA.

Your frustration is understandable.

Like me, you want to KNOW what is going on. Knowledge is power. Tolerating a myriad of unknowns for an indefinite period is extremely difficult.


Hugs, Elaine

[s162216]

Jan 10, 2014 0:52:27 GMT capedeb said:

Yes, Thanks, should have specified.

elained hypogammaglobulimea (literally 'low gamma globulins [IgG])' is an older name for CVID, or a CVID like condition. Its what the condition was originally called by the American paediatrician Charles Janeway Sr in 1953, when he became aware of a child who had great difficulty in fighting infection, and was deficient in IgG, but differed in description from the first known PID condition Aggamaglobulimia (I.E a total lack of immunoglobulins - now more commonly called or described as XLA) described by Ogden Brunton a year earlier.

The name is sometimes still used today as a generic term to describe an unknown low IgG condition, but most commonly it applies to those with CVID.

Sam

[elained]

Hi Sam, Hope you are feeling better!

I used this article to address the differences between CVID and hypogammaglobulinemia.

Common variable immunodeficiency and idiopathic primary hypogammaglobulinemia: two different conditions within the same disease spectrum

This study describes the clinical and immunological characteristics of a group of patients with idiopathic pri- mary hypogammaglobulinemia who do not fulfill the cri- teria for CVID with respect to a reduction of two immunoglobulin isotypes and/or an impaired response to vaccination. These IPH patients have not yet been well described in the literature and cannot be sufficiently clas-sified within the current PID diagnostic classification system.4

www.haematologica.org/content/98/10/1617.full.pdf

I'm sorry if I confused things for Capedeb!

Hugs, Elaine