Yesterday I was diagnosed with a selective IGg1 deficiency. I am 43. I am waiting to be tested post pnumovax to see if I can make antibodies to pnuemonia.
I suffered severe strep pneumonia in March requiring a thoracotomy and a month in the hospital. It reoccured just 3 weeks ago, again landing me in the hospital for a week. I have had a long long life of sinus infections,colds, bronchitis, walking pneumonia and antibiotics.. they say I have asthma, I use Advair. I know there are others that have this although it is rare. What do we do? What am I in for? IGIV does not sound like much fun. anyone? it could be worse I know. thanks

Hi KSmary, I have igg 1 deficiency and yes it is quite rare. and have suffered from pretty much everything you have listed and more, at this point I am not on IVIG just treating things as they come up but if I get a really bad infection they will have to put me on IVIG they say. I am also 43 did you have symptoms all your life and just not have a DX?this is what has happened to me till things got so bad I really pushed the DR's to run test and they found i was low on igg 1. as far as to what your in for I am sure it would vary from person to person,but I have had times where I feel great for a few months then times where I am sick for months at a time. Ray

Hi Folks, I was diagnosed late September, don't recall if (I ever knew) about levels of the subclasses of IGg and my Dx but IgA and IgM are also low. The second time they ran the test the results were worse than the first time...but enter IVIG therapy and at least the IgG levels are much improved after 4 treatments. Whoopie! I *do* recommend the IVIG therapy. The fatigue has been an issue for me it seems almost all my life and although it had been very bad for a while, it is somewhat improved now and I'm hopeful that it will get better with time and continued treatment. I'd had some major allergy issues in August which I believe are what triggered acute asthma then bronchitis set in and did not resopnd to antibiotics. Luck was with me. My primary, who is an excellent doc, was away on vacation so my allergist/immunologist was taking care of me during this time and he made the Dx. I understand most(not all) folks with CVID are diagnosed by 40. I'm 64 and the doc keeps musing, "I wonder how long you've had this????" Who knows! While the diagnosis isn't wonderful, it is a relief to *have* a Dx and an available treatment. The not knowinng was, for me, worse. If there are any other older CVID folks out there, I'm curious as to how age may or may not affect the course of the illness.

Hi,I am IgG1 & IgG3 deficient & have suffered infections all my life. Mainly sinus & chest problems. It is a rare condition, however having only been diagnosed 2 years ago it was a great relief to understand why I have been so unwell over the years.The bugs have now become resistant to all the available oral antibiotics so I rely on Immunoglobulin transfusion every 2 weeks to try & remain infection free and when that does not work it is an in-patient session for 2 weeks of Gentimicin & Ertapenem IV antibiotics. IgG transfusions are not too bad, but I do have side efects for 48 hours after the infusion due to the IgG fighting any infection. Hope that helps. I wonder how many people are IgG1 deficient?
Bob (Edinburgh UK)

I feel like this is an alcoholics anonymous meeting...okay enough humor.

I was diagnosed around September/October 2006. I went through the tests as well, nada, I don't even register with my Ig's.

My doc has been battling with insurance until now to get approval. I get my first infusion tomorrow! I am a bit nervous.

Like most of you I have battled with bronchitis and sinus infections growing up, in my twenties I started getting pneumonia. I am now 32 and obviously things don't always get better with age. While waiting for insurance to approve these treatments I developed a gram negative bacterial infection around my right lung, which in turn caused me to get pneumonia as it slowly collapsed my lung. I spent half of December in the hospital being treated and ultimately had to have surgery to have the infection mostly removed from around my lung. I followed that up with three weeks of at home administered IV antibiotics.

While in the hospital they tried giving me an infusion. Since insurance wasn't approving it as treatment outside of this case, they had no problem approving it while I was in the hospital (damn insurance). However, about 45 minutes to an hour into the infusion I had fallen asleep and woke up with a chill like I've never had, shaking uncontrollably and my temp shot up to 105. They stopped the infusion, but we have no idea what if my reaction was to the IVIG or that my body was going through so much that it was coincidence. I did have a few more mild spells like this one previous nights. We did do a lower dose at a lower rate the following night which went well, but it was only about 1/4 of what I need.

So there is my intro, I have spent some time reading these forums and other info online for the last 4 months. I just decided to sign up knowing that my infusions begin so soon and wanting to be able to really learn more and share my experience. Especially with those that are just finding out and going through the same things we all did when we first found out.

My son he is 10 and has Igg1 def. and his total Igg is quite low we have been trying antibiotic therapy for several months and he still is tired and keeps getting sick..We are finally after 1 year getting ready for his first infusion the home nurse called today and we are planning on his first one being this friday or monday...It is sooo great to see that others understand what my family is going through and exspecially my son...If any of you get the infusions now any suggestions before on how to make this a bit more comfortable for him...He is scared and I am just a wreck hoping this finally helps him have more of a normal life..It is tough I really feel for those of you who have lived your whole childhood and adult lives with this disease not diagnosed each and everyone of you will be in my prayers....
By the way I posted on here last year and noone only had subclass 1 deficiency.(from what I understand it is very rare)..It is good to finally get to hear from others with the exact same problem....

Hello, well we are like you all...Yonatan was diagnosed at age 40 with CVID. He had his 2nd IVIG treatment this week. I new to this forum, I am active on the XLA forum on yahoo. We are lucky by living in Israel we don't have to worry about insurance hassels with socialized insurance but we don't have the luxury of choosing which brand of the IVIG we want. Does anyone have any experience with vision sensitivity after treatment? Also, have you found that it has taken a few months of treatment for you to get your strength? I definately noticed a difference right away in Yonatan's energy levels and the second treatment was completely different and much more successful than the first (no aseptic menegitis for one thank goodness) but he is still getting colds and rashes, and his vision is bad.

Any feed back is most welcome!

Sending you all the best of wishes for good health!

Rikvah (and Yonatan)

Hello to all of you here:-)

I was so pleased to see that there is a forum for all of us who are suffering with immunodeficiencies:-) I was diagnosed with an IgG deficiency in year 2000,but I have been sick since I was born. It has been so frustrating during these years before I was diagnosed. Felt like the doctors never believed me and had to fight for being heard.The average time for getting the right diagnosis is approximately 6-8 years for grown-ups. It says it all...We are so many that have been sick through our whole life because of the lack of right treatment. Since 2000 I've taken weekly infusions with gammanorm.My reactions after the bloodplasmainfusions are that I am throwing up,getting high fever,shivering an that my temeperature drops drastically. Sometimes all of this develops into a heavy migrene that lasts for to or three days.
I have a whole lot of infections in my lungs, stomack, mouth, muscels, throat etc. I also have asthma and migrenes.

Hello to all of you here:-)

I was so pleased to see that there is a forum for all of us who are suffering with immunodeficiencies:-) I was diagnosed with an IgG deficiency in year 2000,but I have been sick since I was born. It has been so frustrating during these years before I was diagnosed. Felt like the doctors never believed me and had to fight for being heard.The average time for getting the right diagnosis is approximately 6-8 years for grown-ups. It says it all...We are so many that have been sick through our whole life because of the lack of right treatment. Since 2000 I've taken weekly infusions with gammanorm.My reactions after the bloodplasmainfusions are that I am throwing up,getting high fever,shivering an that my temeperature drops drastically. Sometimes all of this develops into a heavy migrene that lasts for to or three days.
I have a whole lot of infections in my lungs, stomack, mouth, muscels, throat etc. I also have asthma and migrenes.

Hi,

I am 65 and was just diagnosed with Hypogammaglobulinemia. I had never heard of it. I'm told my IgG level is 610, so I start infusions tomorrow. Not looking forward to them. Still waiting for ins approval. You gotta love ins companies. You pay for ins and when you need they don't want to come thru for you. I didn't realize one gets sick from the infusions, swell! I'm driving myself. Hope I can make there and back home. I've had one URI after another and constantly run a low grade fever. This has been going on for over a year! On top of this I have pernicious enemia and get B12 shots once a month, and I have Essential Tremor on top of that!!. God has a funny sense of humour. Glad I found this group.