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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deleted_user 02/12/2011

I have recently started igg infusion treatment and am not really sure what to expect and hoping that some of you may have some answers. I have received my 1st treatment and have not seen any difference if anything, i have felt worse. I am really struggling with fatigue and muscle pain. I didn't know if this treatment helps with that or if it just helps with infections. If yall could explained your experience and if there is hope i will begin to feel better in a few months or not.

Thanks for all the help/stories!!

deleted_user 02/13/2011

It will definitely help with the infections. And it should help with fatigue in the long run (however, the treatment itself might cause a day or two of fatigue, headache, low back pain, or general flu like symptoms - but those will pass in a day or so). I have had so few infections since starting treatment over a year ago. Definitely worth it!

deleted_user 02/13/2011

depends on the person, How fast your infusion goes in, dosage and prep before infusion, symptoms and other conditions..

I had my first treatment in Nov 2010. I get 35g once a month. I get a pepcid, benadryl, tylenol cocktail 20-30 min before treatment. Then Benadryle 24-48 hrs after w/ prn tylenol. I have sometimes gotten head aches, back aches, and faitgue the first couple days and then I'm good for about 2 1/2 weeks before i start feeling icky again. But we are still playing w/ my dosage and how often i get the treatment.. I have been keeping a journal to remind myself of the progress and symptoms that I have over the month with the dosage written as a heading. That way I can track better for my own sake. my 1st infusion was a tester one w/ smaller dosage so I really didn't see a difference.. But after the next couple I noticed changes..
Welcome, this is a great group of people.. very informational and understanding.. Good luck.

kelli1b 02/13/2011

First of all, welcome. This is a great place with wonderful people! The actual IVIG treatment can cause flu like symptoms - exactly what you described - and worse for some of us. I did IVIG for 2 years and had HORRID reactions to it. Switched brands 4 times until I finally found a good one with a speed slow enough that I didn't have any reactions - then BAM a new doc switched me to subcutaneous Ig.

Typically, IVIG can take anywhere from 6 months to a year to start working. For me it started working sooner. I started noticing that my infections were not turning into pneumonia or bronchitis anymore and that I was only sick for a few days, then eventually, never. Now I RARELY get sick anymore. Huge change from before IVIG. I kind of am an anomaly though, most people on here still get sick, just not like before treatment. Hang in there, you will start feeling better soon :)

deleted_user 02/13/2011

I have been on IVIG and now scig for 5 years. I used to get sick with the IV infusions but since starting scig I am a thousand times better. It helps with the infection. I think it can cause fatigue and headache. In time, once your body gets used to it things get better. I have been doing this since 1990. I have had only two sinus infections in the last 5 years on scig. I wish you luck and good vibes on your new treatment.

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