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.

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/ Common Variable Immunodeficiency Support Group

Labs on treatment...

gliderlove
gliderlove
I am having a lot of lab work done tomorrow. We are testing for some additional deficiencies, a bunch of random junk, and re testing all of my antibody responses. They initially were drawn in some odd time frames so he wants to find a "new baseline." I have only skipped one week of SCIG and my labs are being drawn tomorrow. Aren't all of my antibody levels going to be normalized because of the infusions? He is concerned about the reactions I am going to have when we make the switch to IVIG so wants to make sure everything we are doing is on the right track. I am concerned that the labs are going to show false results because of the infusions, and this crazy doctor will see me as normal! My initial testing showed slightly low overall Igg and I did not have any antibodies to the vaccines they tested. I am finally getting positive results from the infusions, and spending less time on antibiotics so I am nervous if we take the infusions out of the picture I will see huge declines. If you have any info on what differences to expect in my levels with being on therapy it may help my mind not to wander so much!! Thanks:)
deleted_user
deleted_user
Hey Glider,

OK so, I'm just not as smart as your post so I might misunderstand some of what you wrote :)

I think you don't have to worry about the Dr seeing you as normal- the place that is treating has the best of the best Dr's and I think he will know false negatives (or is it positives?) when he sees them. The fact that you had no reaction to any vaccines is a HUGE red flag, so I don't think you need to worry about the lab results, and no doubt, your labs will be repeated over and over (and over).

The second question, do you mean switching from SubQ to IVIG and having a few weeks in between with no infusions during the transition? Or having IVIG and then your levels declining before the next infusion over the 3-4 weeks between infusions?

I think I am either reading that part wrong or missing some info...I'm going to leave that part up to some other folks or until I understand the question a little better :)

Well, I have been of no help, my friend, but I do think you are in good hands, and I also think you are wise to question every test and every decision until you are 100% comfortable with every new aspect of your treatment plan.

:) LuLu
gliderlove
gliderlove
Sorry, I blabbed a lot in the post. They are redoing my lab work as if they are looking for a diagnosis. They want to determine that I do have an immune deficiency. My initial labs were not drawn quickly enough after I had my vaccines, and so I guess there is some possibility that I had enough time to lose antibodies before my labs were drawn. It's all crazy. So now he is drawing bloodwork as if we are starting completely over and searching for a diagnosis so he can compare documentation, but in my opinion he is not getting accurate baseline responses since I have been on infusions. The infusions are giving me antibodies and therefore in the lab work I would show that I have adequate antibodies even though they are not what my body is producing on my own. Does that make any more sense? It's so simple but yet so difficult to explain! I'm just wondering if I have an accurate thought process. If we test my antibodies while I have been infusing, are the tests going to show that I have normal antibody responses? I would think when they facilitate re testing I would need to be off infusions for several months to get a more reliable picture of the antibodies I make on my own rather than saying I have sufficient antibodies when those antibodies were from the infusion. So much going on. I just want piece of mind that we are on the right track. I'm responding well to infusions and I really don't want to come off of them and decline. So many other scary tests going on. I just want to feel confident that we have answers so I can stick with a treatment plan and move forward. This is all so exhausting!
deleted_user
deleted_user
Hey Glider,

Thanks for clarifying...I think I understand better, and I definitely understand your concerns better.

I know there are definitely more qualified people here to answer your question, but I think, that while due to infusing, you may show levels in range, i don't think you would be at the high end of in range especially since you skipped a week- having weekly infusions means you don't have a massive amount of antibodies stored up like IVIG- I bet you can even tell you need your Sub Q right about now. Also, again, you mounted no response to vaccinations which is a huge red flag signaling Immune Disorders, and that won't change no matter what your IgG levels.
I would express your concerns to your Dr, No one says you have to stop your current treatment if this wants to pull you off Infusions forever-you can always stick with your current treatment plan. But my hope is that this Dr is smart enough to factor in a certain amount of leeway based on the fact you've been infusing.

I can see why you'd be nervous about the possibility of having to stop transfusing for new baseline tests, and this does not seem healthy at all based on your history, so I would definitely ask all of these questions and as many questions that you need to until you feel comfortable, before agreeing to anything. Let the Doc know you are finally seeing some improvement and ask what he thinks his treatment plan can do to improve your quality of life vs your current treatments...

Post and let us know how it goes
You are an intelligent young woman and I know you have a voice of your own...I have complete faith that you will ask all the questions you need to, and I know you have the ability to choose the best treatment option for yourself.
:) LuLu