Hi Arlene,
I understand feeling a bit overwhelmed with all this new information coming at you. The vaccine challenge does not use live vaccines so they should not be a problem. Many of us have a variety of autoimmune diseases, and a variety of frequent infections. I'm glad to hear your Lupius is in remission.

I see an immunologist as many do. Some people see hematologists. What doctor is working with you right now on this? If this is not a specialist, that doctor could make a recommendation for you.

When I was first diagnosed, I was very overwhelmed and scared about what all this meant. I was diagnosed.july of last year. I had a very poor health history and had low igg and nearly no iga. I asked lots of questions and did some of my own research, looking at reputable medical sights. Once I realized the diagnosis for me was a critical piece of the puzzle that allowed me to begin changing what has been going wrong, things eased off. Then I started infusions which overwhelemed me all in of itself. That is now second nature. I have nice improvement in my health since my diagnosis and starting treatment. I wish you well and encourage you to ask all your questions. There is a lot of experience here that can help support you as you unravel all this new information. Hugs - Zen

Many thanks Zenaby! I have a hematologist that I see yearly for my platelets. She has an interest in platelets. I saw her just a few months ago. My platelets were down and she was a little concerned, but we chaulked it up to being on so many antibiotics for sinus infections. Funny thing is it was ME who had concerns about low immunity. But I also thought the SI's might be from allergies. I saw the allergist and, funny thing, she wanted to do more allergy testing and I said "fine," but we need to test for low immunity. My Igg3 is very bad and some of the other ones aren't looking so good. I'm considering asking around for a good immunologist. Any thoughts on this???!

Weird questions: I've been having stomach issues of late. Could it be related? Also, as far as Sjo. Syndrome goes, some folks feel vegan and/or gluten free diets are helpful. Any scientific or anectotal evidence about certain diets helping with this condition????

Also...what are some of the more common AI illnesses you've noticed here co morbid with cvid?

I am extraordinarily upset...but doing my best to calm down.

Many many thanks.

PS wish you could edit here. The allergist is also an immunologist. But she only works three days a week...a little concern. She is the one I see next week. Her nurse called me the other day with the test results and explained a little about the challenge.

What is your total IGG level? IGG, IGA, IGE, IGM - those are the main ones, the ones you listed are subclasses (which when all combined gives you your total IGG). CVID is "typically" classified as low IGG and IGA or IGM, then low or no response to vaccines (vaccine challenge is typically given 2 - pneumonia and TDAP), characterized by severe, persistent, unusual and recurrent infections (SPUR). Now, do people get diagnosed with cvid outside of these guidelines...yes, but typically they fail the vaccine challenge which shows an antibody deficiency. As Zena said autoimmune is super common with CVID patients.

I have to tell you, CVID is very manageble for most once they are on optimal IGG replacement. It will not manage autoimmune issues, typically just infections and in some pain from arthritis and fatigue.

It can be quite overwhelming for some. This board is a great resource. Perhaps talking to someone also might help? Gammagard has a fantastic support program and you can speak to a patient advocate for free :) 855-250-5111 option 1 ( i think its option 1 as they recently changed it lol). Tell them Kelli says hi :)

Thank you Kelli!
IGg3 is 18

Immunoglobulin G Serum 1086
IGg4 is 5
A is 139
G is 1137
M is 167

G subclass 1 is 690
G subclass 2 is 258
G subclass 3 is 18
G subclass 4 is 5
Tetnas
antibody is 3.33

Platelets 50
Don't know what these things mean. I'm having freaky stomach pains. Sinus infections for two years. Bronchitis twice. Bladder infections for about a year very bad stomach issues....nausea left and right for about six months.

Does this make any sense?

Allergist/immunologist wants to see me Tues. To discuss "challenge." I'm so tired between all the autoimmune issues and infections,
And this new info.

Any and all advice profoundly welcomed and appreciated. Thank you.

Arleen,

Welcome to the group, you will not find a better support group to help you through this stressful time during the diagnosis period.

As Zen mentioned, the shot is a vaccine, one like the flu shot and you should have no reaction, unless you are allergic. The waiting period after the vaccine is typically 3-4 weeks which does seem like forever. My doctor actually kept me in the dark so I had no idea what I was being tested for until the diagnosis. I appreciated that as I was not on pins and needles waiting for the outcome. Ignorance sometimes is bliss.

Your total IgG numbers look good and are in the normal range, which is a good sign. I have been on Immunoglobulin therapy now for over 1 1/2 years and just hit my highest- 963. I haven't seen the 1000's since before 02/09. After I began IgG therapy, I was in the 800's until this month, and my total count when I began treatment was 402.

It looks like you may have IgG Subclass Deficiency, which normally does not need Immunoglobulin transfusion therapy, but the titer test (vaccine challenge) will tell a bigger picture.

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/igg-subclass-deficiency/

Stay strong and try not to stress too much, worrying does not change the outcome and can only make you sicker from the stress.

I see an Immunologist and as Zen mentioned some patients are referred to Hematologist. I also see a Hematologist/Oncologist and both doctors communicate with one another since I have a very high risk of getting cancer.

Praying that your vaccine challenge is normal.

Denise

Hello Arlene and welcome to our little group..

People here have different experiences and as Zen stated a variety of infections. I had tons of staph & sepsis and pneumonia and was hospitalized 2-3 weeks every month. Did that for three years. My hematologist just told me he needed to figure out why I was so sick all the time..I had no idea he was testing me for CVID..I was in the hospital last July 22 & on Aug 1 he came in & told me I had CVID..I had my first treatment of IVIG that same day.. On Aug 8 I went home...

Now I go every three weeks, Have not been in the hospital for almost 7 months..My stomach issues are a lot better..Not perfect, but I have other problems not related to CVID..Plus I have a lot more energy..

Hope they figure things out for you soon..
God Bless
Cheryl

I have subclass deficiencies and do tx.... I however was in and out of hospitals like nobody's business....

So who knows its different for every individual... You never know mine didn't start in the 1000 though I reached that after txt though.