Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi,
I'm newly diagnosed with CVID by a good doc, tho with limited CVID experience - good at URIs vs. potentially related GI, joint and viral problems. I've had 4 IVIG tx, with a drop in GI and URIs, but still, different middling problems in the last 10-14 days of the tx cycle.
Upon advice, I got an IDF doc referral and just saw him, but he wants to repeat the pneumococcal test because my results looked ok to him (tho not to first doc). However, that means being off IVIG for the next 3-4 months to be retested.
I teach and we are just back in session, so I am at greater risk of catching something. In the past few years I seem to be pretty sick from Sept - May, with milder URIs in the summer. The thought of going off IVIG is very troubling.
My total IgG=509, serum IgG=495. IgG1=233, IgG2=196, IgA=71, others normal. H influenza=.52, tho tetanus was fine. The pneumococcal is confusing and I don't understand the numbers - my first test was almost all flat, the second (Pneumovax) had some response and 3rd test (Prevnar) had a little more response, but out of those only 10 strains were 2x the second test and 13 were not.
The IDF doc did some T cell and B cell tests and he agreed to provide abx if needed and even iG if things don't go well. I am at a loss as to which path to follow. Has anyone gotten conflicting diagnosis and/or come off IVIG for retesting? Any insight into the pneumococcal test?
Thanks very much,
ZuZuP
I'm newly diagnosed with CVID by a good doc, tho with limited CVID experience - good at URIs vs. potentially related GI, joint and viral problems. I've had 4 IVIG tx, with a drop in GI and URIs, but still, different middling problems in the last 10-14 days of the tx cycle.
Upon advice, I got an IDF doc referral and just saw him, but he wants to repeat the pneumococcal test because my results looked ok to him (tho not to first doc). However, that means being off IVIG for the next 3-4 months to be retested.
I teach and we are just back in session, so I am at greater risk of catching something. In the past few years I seem to be pretty sick from Sept - May, with milder URIs in the summer. The thought of going off IVIG is very troubling.
My total IgG=509, serum IgG=495. IgG1=233, IgG2=196, IgA=71, others normal. H influenza=.52, tho tetanus was fine. The pneumococcal is confusing and I don't understand the numbers - my first test was almost all flat, the second (Pneumovax) had some response and 3rd test (Prevnar) had a little more response, but out of those only 10 strains were 2x the second test and 13 were not.
The IDF doc did some T cell and B cell tests and he agreed to provide abx if needed and even iG if things don't go well. I am at a loss as to which path to follow. Has anyone gotten conflicting diagnosis and/or come off IVIG for retesting? Any insight into the pneumococcal test?
Thanks very much,
ZuZuP
I don't know that I can offer you much advice, except to say that I support you to trust your instincts, whatever they may be. If you have a hunch about something, you are probably right, at least follow up by asking a professional about it.
I am also in a similar situation. My doctor diagnosed me with CVID
because of how I presented and my family history- before he did the vaccine challenge.
After the vaccine challenge (my immune system did respond well to it)
he diagnosed me with hypogammaglobulinemia. I am confused, and still don't know if the vaccine will be enough for me not to get as sick as I have been. It's very frustrating.
I'm with you.
Thanks so much for your reply. It does sound like you're dealing with a similar situation and it's good you've gotten an accurate diagnosis. My first doc said CVID and hypogloblinemia were the same, but apparently there's a difference as you noted. And it's good that your titers are protective. :) Your IgG does seem pretty low so the Hyqvia should be helpful especially if you're not sure about the sinusitis.
I've had more testing with the new doc and it looks like my T cells are not quite with it, so he will be doing some more testing. We've just agreed for me to go back on Ig, Hyqvia this time, because I started with some mild - moderate symptoms that had disappeared while on the IvIg and now, are up and down every few days. So, I seem to be invested with this doc at this point and will continue working with him.
Hang in MistyCarm and be well!
Thanks for your kind words of support. I think sometimes the transition from one thing to another can be unsettling at times, and I appreciate your reminder to trust my instincts.
Your situation does sound similar and despite the backwards order of things, it's good you have protective titers. My new doc did say that sometimes folks can have a good response to the vaccine, but then not be able to maintain it over time, so please be aware of that in case you find yourself fighting off something down the line.
As MistyCarm experienced, hypogammaglobulinemia might be treated with Ig - did your doc bring that up? Maybe it depends on the test results of the total IgG as well as the subclasses. Perhaps you should talk more to your doc especially if you've been sick/have concerns about getting sick?
H. Influenza is Haemophilus Influenza type b. Apparently it's an encapsulated bacteria, like Streptococcus, and I believe folks with CVID are more susceptible to them, based on what I've read online. My antibodies to diphtheria, tetanus and h. influenza were tested - the first two came back with protective amounts but the H. influenza was low and not considered protective.
Hope that helps and really hope you're feeling better and doing well.