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

Side effects

Marilyn-Doss-Wright
Marilyn-Doss-Wright
My typical cycle is, I have my infusion on Friday and it takes about 6 hours. I am very tired and rest on Friday. Saturday I am tired but nothing too bad. Then on Sunday is when I feel the worst with a head ache. Over those three days I have pain that starts in the back of my neck and slowly makes its way down my back and then finally subsides. Then, sometime Monday I get a start to feel GREAT.

This month it is Tuesday and I still have a lot of pain. I wish I could figure out what the difference is when it feel better on Sunday versus still in pain on Tuesday. I do the same routine as much as possible and still it varies so much. I know it is probably some due to the exact makeup of the IgG I receive and likely how much IgA it contains (I get the low IgA Gammagard) and if I have been exposed to anything recently. I just felt like whining since I still feel miserable today.
kelli1b
kelli1b
Im agreeing with you...possibly the batch you get varies a little each month....just wanted to give ya a hug and tell you whine away :)
deleted_user
deleted_user
That's pretty much my experience too - 2 days of general malaise, then the third day is always the worst for the headache; some months I perk up faster than others. How long have you been getting infusions? Mine have definitely gotten easier over time, and I hope you have the same experience.
markincleveland
markincleveland
Have you tried other IG drugs,
are you hydrating - you might ask them to run a bag of saline or D5W along with your infusion,
have you tried slowing the speed of your infusion?
have you tried staying in Allegra and Tylenol for a few days after your infusion just as a prophylactic measure?
Some or all of there might help . . they have with other patients I personally know
Marilyn-Doss-Wright
Marilyn-Doss-Wright
My infusion rate is 90, and I take the tylenol and benadryl for three days and typically that is perfect, but occasionally when I stop the drugs on Sunday night, pain hits on Monday afternoon and once it starts it is hard to get it to subside. I hate taking drugs so I try to only take what is necessary and for me Sunday is usually that day. It is hard to judge when you no longer need the pain killers until you stop taking them and then it is even harder to get the pain back under control. Sigh, My mom died from liver disease from prescribed drugs and I always have that in the back of my mind when I am taking pills that have liver damage as a possible side effect.