Hi Green Girl,
I have noticed the same problem. After my first dose they dropped my down very slightly, which was good for no side effects, but doesn't seem to last as long. Fatigue, aches and pains seem to start sneaking back after only 2 weeks.
I remember that you had allot of pain issues. Me too. I am going to a new pain clinic on Thursday praying that someone will finally be able to help me. Too many problems to list, but they are all afraid of any opiates. I only need 2 a day to send me into full life mode. Without any, they try to feed me with valium, lexapro, all sorts of crap. I really only need a very small amount of opiates to increase my energy and control my pain.
How are your symptoms?

Bless you, I do sincerely hope you feel better it is frustrating life is SO precious to lose more to illness seems unbearable.

Yes, I get pain, fevers, weakness, infections and I am just basically miserable with illness, I feel it all over it is always on the third week. I was feeling so much better the Sunday before last. I am having my IVIG tomorrow so I am grateful for that at least. It has taken me 20 years to find the right treatments, I am eager to feel much, much better.

How much do you receive and what body weight may I ask are you? Maybe we can swap notes.

I do not take any drugs I cannot tolerate them, I am sure they only mask the problem.

Thank you for your answer, I really appreciate you and wish you all the very best.

I know that I am getting the Gammaguard. I believe that the dose is 35 grams. I started out higher but they dropped it down after my first infusion. I will really need to quiz my nurse next visit, soon, and get the details. I am very bad about that.
I weigh about 150 pounds. Once they get the infusion going, it only takes about 2 hours. After the first 10 minutes or so she really turns it up fast and it has never bothered me luckily. I did hook up with a new pain clinic yesterday and am really optimistic. Very low dose of opioads to get me through my day. Otherwise I would spend too much time just laying around. At least that gives me a little push.
Let me know what your dose is after your next visit and how long it takes you etc. At my infusion center I have only met one other person with CVID. He is a 12 year old boy and hates every minute of being there poor kid. Someday I would love to run into another woman. take care.

Hello, I am really grateful you wrote. It seems you have had the higher dose. What dose now do you have and how often. I had mine yesterday and felt much better today, I am tired now very much because I over did it but still better. I shall ask my Dr about once every three weeks. I am 98lbs and have 171/2 grams, I have Gammaguard too I think, or at least I had that last year. The dose takes two and half hours when I first started it took me 6 hours! And that was a lower dose. IO had reactions but they seems much better.

I hope you feel better.

that tends to happen with IVIG...the levels drop and may feel sick. That's on reason why i do subq once a week-the levels stary the same

You might consider switching to the weekly subcutanious treatment Vivaglobin - gives you less weekly but it keeps the dose more even. We give it to our 5 year old. The other advantage is you can give it to yourself from home and I think it's less expensive since you aren't paying for nurses/hospitals. My son has less side effects.

Hi. I'm new here. Was diagnosed about 3 years ago with CVID and took IVIG every three weeks for two years. I was feeling so good I stopped the IVIG for a year. Now, I'm recovering from pneumonia and chronic sinus infection. I restart IVIG tomorrow.

Back to you Green Girl, I'm wondering why they don't have you go in every three weeks instead of once a month? I think that it's easier for the body to gain long term strength when doing well consistently, as opposed to feeling good for three weeks and not so good a week a month. Does that make any sense? Anyway, God bless you - Gina

Thank you Gina, I hope you feel better soon. Yes, I asked my Dr but at this stage he feels he wants me to stay as I am on the monthly dose. I think every three weeks would be better too.

Bless you.

The half live of Immune globulin is about 3 weeks. That's why you need monthly infusions or weekly subq.

Wow! I'm glad my doctor is scheduling me for 1 treatment every 3 weeks! I hope insurance will cover that!