Common Variable Immunodeficiency Support Group

Can anyone please answer a question I don't understand please? I figured that the IVig would help me to fight off illnesses. Is it possible to get a flare up of symptoms (fatigue, pain all over, etc. just all by itself even if you are on Ivig? I mean being sick without it being from sinusitis or bronchitis. Just there by itself? Thank you

I know, it looks like all new people on here. I was locked out of my account since they relaunched :( I am trying to find all my old posts to share the links with all the newbies on here. Soon!Kelli

Hi Herd,I was wondering who all has struggled with elevated liver enzymes? I know I have posted about this before, but can't seem to find my oriignal post and more has happened since anyhow. Long story short. I was on Imuran for GLILD related to CVID and went into liver failure as a result three weeks later. I was obviously taken off Imuran and told me enzymes would/should normalized in 4-8...

Hi All! I hope everyone is doing well today!I'm currently taking Gammagaurd SubQ and I'm thinking of making the change to HyQvia. I'm hoping that those of you who are on it could talk a little about your experience with it so far. How was your ramp up period? Did it take long for your body to adjust to the newer medication? Do you have any tips? Any advice/help would be so appreciated!

Today I came from the doctor. Like I stated in a previous post I'm 26 and was diagnose with CVID at 2 years old. I'm still seeing a pediatrics doctor and this doctor seems to be the only one in this particular hospital that understand CVID. My health has worsen and today I found out that a Bone Marrow Transplant is an option for a "cure". This is some big news but scary at the same time. I don't...

Hi all,I am in Australia and been under my hematologist now for about 8 years. I have just started researching Mild CVID as I had a copy of his letter to my new doctor. I dont understand why he has offered no treatments to me. I have listed on his letter CD4 T-cell Lymphocytosis of Uncertain Significance. I have found out I have Ehlers Danlos, MTHFR, and a Thrombophilia mutation in this last...

Hi everyone,Im so glad I found this support group...there aren't very many people to talk to about cvid.my son was dagnosed 7 years ago and had received monthly IVIG until we recently switched to weekly sub-q. He receives 25ml for each treatment and our pharmacy recommended that we use 6 sites. That seemed like a lot of sticks each week so we decided to go with 5. Our immunologist though that...

Hi I was wondering what you all know about the IgA content of Hizentra. I got a phone call from the company today. My order is for hizentra SQ. I thought I was going to need IV but apparently my doctor changed her mind. From what I've read seems SQ had less risk of systemic reactions.... But I'm wondering about the IgA content as my IgA is low and I'm told I need a low IgA product. Anyone on this...

I find that after I am active physically for a few days, I then have to pay for it for several days more. Is this the course of the disease? I have been on IV for i year, although the type, strength and frequency have been changed. Any insights or thoughts?

How do we get to caregivers support group? Thank you Nina

Hey everyone! I am new and I was actually referred to this site because I am really starting to be physically and emotionally overwhelm with CVID. I was diagnose at 2 years old and have been receiving Ivig (Privigen) monthly since. I am now 26. I have been through sooo much with CVID. I don't know anyone who has it because it's so rare and at this point I'm happy to find this site and to know I'm...

Where is site for care givers? Thanks

Does anyone know why this format changed? It was so much more person and warm the old way. I miss what was.

One of my biggest concerns is that it has been suggested that Lamictal and other seizure drugs can be a cause of CVID and that the disease went away when they stopped the Lamictal. This would have great impact for people with CVID and to epileptics or bi-polar individuals. I think it may have been only one study but please tell me what you have heard about this and I will hopefully let it go....

My repeat scans for my lymphadenopathy was denied. I went to get the scan today and found out. It's now pending peer to peer from my doctor. What do u all do about work??? I work 5 days a week. I work regular business hours and am out of vacation time. I've had one week that was actually spent on vacation the rest has been used up with doctors visits, scans, tests, biopsies etc. (I get 3 weeks)...