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 all,
I was doing some research and apparently CVID is an umbrella disease for many subsets of diseases that encompass low IGG and sometimes IGA and IGM.
I had a doctor's appointment yesterday and i was told that I have 3.84igg, less than .06 IGA and .86 IGM. I was also told that my b cells and t cells are low except that i have an overactive cd-4 and 19 and something to do with the t cells that make me more susceptible to secondary autoimmune diseases. So now i am going to get a breathing test every 6 months. Can you score lower on breathing tests even after you have colds and sinus infections or does it have to progress to bronchitis/ pneumonia?
Does anyone else fit this profile: low in all three and off levels of t and b cells? Could anyone please help to explain what t cells and b cells are in relation to cvid if you know?
What should i look out for? Any advice?
I am feeling scared, but i guess that is a feeling that comes along with more information without fully understanding what it means.
Thanks,
CChris
I was doing some research and apparently CVID is an umbrella disease for many subsets of diseases that encompass low IGG and sometimes IGA and IGM.
I had a doctor's appointment yesterday and i was told that I have 3.84igg, less than .06 IGA and .86 IGM. I was also told that my b cells and t cells are low except that i have an overactive cd-4 and 19 and something to do with the t cells that make me more susceptible to secondary autoimmune diseases. So now i am going to get a breathing test every 6 months. Can you score lower on breathing tests even after you have colds and sinus infections or does it have to progress to bronchitis/ pneumonia?
Does anyone else fit this profile: low in all three and off levels of t and b cells? Could anyone please help to explain what t cells and b cells are in relation to cvid if you know?
What should i look out for? Any advice?
I am feeling scared, but i guess that is a feeling that comes along with more information without fully understanding what it means.
Thanks,
CChris
You've got some very good questions here.
I have no answers for you about the t cells, b cells and such. I am still fairly new and learning lots. I have low IGg, no IGa, and my IGm spikes periodically. I have not paid attention to the b and t cells. I do know that my oncologist is monitoring that though. Now with your questions, I am thinking I should get copies of my last couple blood tests.
I went to an IDF Patient Meeting this weekend and one of the doctors talked quite a bit about CVID as a "catch all" diagnosis and that to be able to target treatment it is important to continue seeking the specific diagnosis to bring us out of CVID. He talked about genetic testing to help identify this and how genetic testing costs have gone down but the analysis of it is where it gets pricy. And how when the doctor sees something specific they can request a specific portion of the genetic test (don't remember his language) instead of having the whole thing analyzed. I am planning on exploring this further. Insurance might be an issue with it but its worth looking into.
I look forward to reading others answers to your questions. - Zen
I only have low IgG subclass 1, so my total IgG is low, but not drastically low. The lowest it has been that I know of is 420. I have no idea about the T and B cells in relation to CVID. My doctor checked mine and said they were okay. I have no doubt that mine is genetic because my cousin has IgA deficiency with frequent infections. Even though we have different deficiencies, I think the same gene caused them in both of us.
As for the breathing tests, I would think that having a cold or sinus infection would affect your results, but I'm not 100% sure. Often when I have a sinus infection, I feel that my breathing is worse than normal. Of course, when I had a sinus infection before, I usually ended up with bronchitis, so that could be why. I can't say for the cold because before IgG replacement, I never had just a cold. It turned into a sinus infection and bronchitis so quickly that I hardly noticed it began with a cold. I think that breathing tests every six months is pretty common. I also have breathing tests every six months. Good news though, my breathing has really improved since I started sub-q. My peak flow went up 100 points and my lung function had also improved.
I wish I had more information for you!
-Ashlee
I'm going to assume you aren't in the states based on the levels you gave. I just converted a friend of mines IGG YESTERDAY who is in the UK lol so your levels here would likely be 380 IGG and normal is anywhere from (depending on which lab you use) 650-1600 give or take. I am deficient in IGG, IGA and IGE. T & B cells play a role in CVID, some have b cells that don't mature properly some have some b cells that don't work..it can be quite confusing. I have lung issues and have t cells in my lungs. Yes being sick CAN affect a breathing test. You should not have a current infection. You could take a look at this document to see if it helps with the t & b cell question at all? This doctor is known to treat a lot of CVID patients:
http://bloodjournal.hematologylibrary.org/content/116/1/7.full
Also with having the Hemochromatosis it put me at a greater risk for having CVID...Not sure if people with CVID are at a greater risk for Hemochromatosis?????
Maybe I should give symptoms of HH? Or explain what it is..Signs and symptoms of hemochromatosis usually don't occur until middle age. Women are more likely to have general symptoms first, such as fatigue (tiredness). In men, complications such as diabetes or cirrhosis (scarring of the liver) often are the first signs of the disease.
Signs and symptoms also vary based on the severity of the disease. Common signs and symptoms of hemochromatosis include joint pain, fatigue, general weakness, weight loss, and stomach pain.
If hemochromatosis isn't found and treated early, iron builds up in your body and can lead to:
Liver disease, including an enlarged liver, liver failure, liver cancer, or cirrhosis (scarring of the liver)
Heart problems, including arrhythmias (irregular heartbeats) and heart failure
Diabetes, especially in people who have a family history of diabetes
Joint damage and pain, including arthritis
Reproductive organ failure, such as erectile dysfunction (impotence), shrinkage of the testicles, and loss of sex drive in men, and absence of the menstrual cycle and early menopause in women
Changes in skin color that make the skin look gray or bronze
Underactive pituitary and thyroid glands
Damage to the adrenal glands.
In my case it wasn't found in time & I have organ damage & no more thyroid & went through menopause very, very, early...
Don't know if this applies to anyone here, but always willing to share ideas...
Cheryl
My understanding is that the research in immunology in general is the hot thing to do in medecine. I am hopeful that they will make progress in determining the genetic component about CVID and help to separate the different types of CVID more clearly. I don't know about anybody else, but I generally feel like the more information I can get at this point, the better!
I am grateful for this community.
I am reading a lot more discussions about subclasses in the states. You guessed it! I am from a land of metric measurements, so thank you so much for converting my numbers!
I wonder what the future holds for us, and whether cures are attainable in our lifetime.
Best,
CChris