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.
Been at this a couple of years. I am in Canada & "pushing" Hizentra 5x a week. My IgGs are up in the right area but I still have issues.
My main complaint is joint pain. I have bilateral mostly limb pain and fatigue. Cold weather is killer. Every year seems worse, pain wise.Today is a rough day - worst of the summer - & I dread the upcoming winter.
My docs have been batting around a Lupus diagnosis but my bloods don't support this. I don't get skin rashes. My wrist, elbow, hand, knee, ankle, foot pain is pretty consistent and symmetircal but really not much swelling. I am always in pain - it's just a matter of what degree it hurts !
Anyway, I saw a Rheumie in March and she diagnosed me with Fibromyalgia. I tried one Fibro drug for almost a month and quit - gained 5 pounds, felt terrible, was bloated....not worth it. Fibro seems to mean "we don't know what it is".
It was only my IgG that was low - yet my hematologist said on his report that I had "hypogammablubelinemia, likely CVID". The joint pain is consistent with CVID but only my IgG is messed up.
Any ideas ???
My main complaint is joint pain. I have bilateral mostly limb pain and fatigue. Cold weather is killer. Every year seems worse, pain wise.Today is a rough day - worst of the summer - & I dread the upcoming winter.
My docs have been batting around a Lupus diagnosis but my bloods don't support this. I don't get skin rashes. My wrist, elbow, hand, knee, ankle, foot pain is pretty consistent and symmetircal but really not much swelling. I am always in pain - it's just a matter of what degree it hurts !
Anyway, I saw a Rheumie in March and she diagnosed me with Fibromyalgia. I tried one Fibro drug for almost a month and quit - gained 5 pounds, felt terrible, was bloated....not worth it. Fibro seems to mean "we don't know what it is".
It was only my IgG that was low - yet my hematologist said on his report that I had "hypogammablubelinemia, likely CVID". The joint pain is consistent with CVID but only my IgG is messed up.
Any ideas ???
Additionally, we cannot be diagnosed with lupus by our blood because we have an antibody deficiency AND we are on IGG therapy. What this means is 1. We can't give a positive result to a test like lupus (ana or antibody tests) and 2. If we do it COULD be from our donor antibodies we are getting. Docs need to understand this and look at physical presentation. Hope this helps.
How high is your IGG? Believe it or not now that mine run in the 1300's, my arthritis is nearly gone. I did not settle with just good levels, I pushed for increases so that I could help manage my extreme pain and fatigue. We cannot simply rely on "good" IGG numbers. Good luck