Thanks for your reply! Sounds like we have similar issues. I have basically no iga. My ig g level was in range but I failed the prevnar 23 vaccine test. I had sore joints but I thought was due to a injury is suffered years ago. The fatigue I just thought I was a person who require more sleep than others? I think it has been my normal for so long that I thought nothing of it. It was eye opening when my dr asked questions about what happens when? You go full force to get something done.etc. my response was I get sick, to basically most of the scenarios! That was sad to me that I never thought how I felt was abnormal! I am feeling very hopeful about regaining energy and my health.

Welcome! I have CVID and actually was never sick, healthy my whole life until I had my daughter and it "triggered" it in me. I was a horrible advocate for myself in the beginning and it wasn't until I had issues with my infusions, I read up on it, attended patient meetings, met others, found this site :)

You....find a new normal (if you will). Infusions take awhile to work and are not a magical cure. They will cut down on the frequency and severity of your infections. For me, not for all, it really took a long time and me being on optimal treatment for it to help with my arthritis and fatigue. Do I still have them? Yep, but they are manageable. I work full time, single mom, own my own home, have 2 cats and a dog, participate in my childs school functions, take vacations and live as normally as possible. It will get better

Thanks for the reply. I have been pretty lucky to only have 3-4 infections a year. I always went to the dr right away because I have known for years iga was low. I also had a deviated septum which was fixed and that further reduced the number of sinus infections. There was never a suggestion to go see immunologist or further investigate. The symptoms of autoimmune really only began after I had my daughter 2 1/2 yrs ago or that's at least when I can remember the fatigue being pretty bad last winter and some this fall. I think I am feeling better about it all. Just the fatigue is hard to deal with at times. Hopefully after several months it will ease up a bit. Thankfully it's not always an issue everyday just some days. I think one of the things that is hard that my family seems to think this is out of left field, asking where you really that sick? I had a nickname growing up that seems to indicate that infections where a problem! I was really sick like almost 15 years ago that's when I found my iga was low. I just wonder if other has felt dismissed or treated like you were overacting. My dr. Did make me feel validated and that the way I felt, exhausted and weeks to months to overcome a sinus infection,etc. As not being normal. I feel like it's hard to explain it all to the people in your life. Even my spouse at times.

In 2009 I became very ill with the H1N1 flu virus. I had it for 6months. That is probably what activated the CVID. I never was so tired in my life. Since then, bouts of bronchitis would wipe me out. No fever, but I felt terrible. In 2014, I got pneumonia, extreme fatique, went to the hospital, and was diagnosed there. My IgG was really low. They did other tests and found I have CVID. I've had infusions for one-half years now. Have side effects even though I'm given a steroid injection, benadryl, and a nausea medicine. They are less since my infusion rate was brought done to 100.. It takes time to adjust to all this, but things are some better. I wonder if any one has experienced agitation after a few hours into the infusion where your legs get restless. Also, usually have leg jerks after going to bed just that night after the infusion.
jJaTee.

Legs restless could be due to dehydration. I used to work night and didn't hydrate enough and would have leg twitching and spasms due to dehydration.

Had my second IVIG treatment. I am having a pretty good headache. Drinking fluids. How do you know if you have aseptic meningitis?

Infused Saturday. Headache started this am (Monday). Ended up taking two doses of treximet to stop the headache. I hydrated well. They premeditated me with Motrin, antihistamine and got Ivf during infusion so not sure what else could have done.

Jenbeth, I had asceptic meningitis in November following my first IVIG, probably administered too quickly. (Now doing weekly subq, rather than monthly IV.)

For me, the very bad headache was accompanied by bouts of vomiting and increasing neck pain (really more like all along base of the skull). It was confirmed by lumbar puncture during a 4-day stay in the hospital.

I hope you don't have it, and I really hope your headache improves soon! Good luck.

I'm curious when I hear about cvid being triggered. Is that something your doctors have said could trigger cvid....pregnancy or h1n1? Just wondering.

Jenbeth - I once had it explained to me like this, and it was so simple and relateable that I keep using it lol

With Primary Immunodeficiency we are all born with a "light switch" if you will (we know its genetic). Some of us are born with the switch "turned on" and are sick from birth. Some of us, that switch gets flipped on later in life, something triggers it. It's been there all along because it is genetic. For me, mine was triggered. If it wouldn't have been having a baby, it would have probably been something else.

I am currently a 28 yr old have been doing gammaglobin tx for 4 years now started on ivig then switched to sub q when I headed into nursing school. I was 21 when i got sick with EBV and CMV (MONO) i got the DBL whammy. I went thorough most of my childhood being "normal" playing sports just missing a lot of school getting lots of infections i was just the "sick" kid.. making it up something was always wrong... but something really was always wrong! Shingles in 5th grade?? ear infection sinus infection after sinus infection.. needless to say after my mono. i didn't get better in college when from Dr to Dr. diagnosed me with mixed connective tissue disease (undiagnosed connective tissue disease) then finally sent me to immunology!

The point to this long story----4 years after being diagnosed long years

I have never felt better on igg- don't get me wrong I have my bad days but i have a lot more good days. I'm curious on how the tx is going? are you doing ivig or sub Q?

The "key" is being on OPTIMAL treatment. Treatment is meant to dramatically reduce the number AND severity of your infections. I think its important for people to know that your starting dose is just that, a STARTING dose. If you are still walking around feeling like death, you should be having a discussion with your doctor about dose increases. What are your IGG levels now? We all have a magic number that we feel better overall at. Mine is over 1300. I dropped down to 1100 and was sick all the time and felt bad. We have to be our own best advocates. You should always know the name of your IGG (I'm on HyQvia SubQ), the dose, how frequent your dose is and in my opinion, your IGG levels.

I just got my third dose of gammunex IV. First time 30g, second time 40g this time again 30g. I told them about my headache after last infusion. Got IV fluids and gave me Claritin, ibuprofen and IV steroid at end. I was anxious about the infusion and didn't sleep well. I plan to see Immuno dr prior to next infusion. If I have another headache that last days I'm not sure I will continue on IV. I have noticed a difference in my energy level and fatigue. I was able to work out multiple days last week without feeling exhausted afterwards. I have drank quite a bit of water like 4-5 liters at least in addition Powerade and Gatorade. So not sure what to do besides that. I think once we get some labs back then we will no where I'm at. I have many questions for my dr. About that. Kelli you are right I must be an advocate for myself and I will do that. Thanks for all your support.

Infusion speed is the number 1 (in my opinion) factor in determining if a person suffers migraines afterwards. It would take me 6 hours for 27 grams when I was on ivig. Some people it takes 8. If I went faster I thoguht I would DIE after...the pain was indescribable. How fast are they infusing your 30-40 grams? typically people like to start at 4 hours (which is crazy to me) but thats what they do. Also why on earth would they change how much meds they give you? Why 30, then 40 then 30?? The premeds he gave you all sound right on the money. Please talk to him about the rate of infusion as well!!

Kelli I got 30 first time, 40 second and 40 again this time, sorry my typo It infused over 3 1/2 hrs. I felt pretty decent today until this afternoon then slight headache again. Took ibuprofen every 8 hrs, my migraine medicine treximet, allergy medicine, oral prednisone. I have drank 180 oz of water 40 oz Gatorade and tried some coconut water just for kicks. So. Feel like I'm hydrating pretty well but maybe not enough?? I have an appointment to see him again (Immuno) prior to next infusion. I will discuss this with him and see what else I can do. I am following all their post infusion instructions per the handout they gave me.