Treatment usually takes 6 months to a year before you see noticeable results. I'm finding more and more doctors are not discussing this with patients. You can expect a reduction in frequency and severity of infections. Fatigue? Well each one of us is different. I don't think anyone ever feels "normal" again. Consider it a new normal and each of us is different. I work full time and am a single parent. I do very little outside of work and rest on the weekends, I also developed a very rare lung disease from the cvid. Some are unable to work. The best advice I can give is to give it some time as this is not an overnight fix. Become your own best advocate, inform your self and try to keep as positive outlook as possible...attitude is half the battle. Welcome to the board!

VT, I just want to say welcome! I too am new to the site,but find this to be a very valuable resource. Kelli offers great info and so do many others!

Just like anything new in your life, you have to get used to it. Granted CVID is a BIG new thing, you have to learn ways to live with it and treat yourself. I was diagnosed in 2008 and have pretty much set myself into a routine. When i open doors and such I used my hips and feet and thats just a habit thing that I started doing over time. Stuff like that starts to become less of a burden over time...

Welcome to the group. Give yourself time to get adjusted. Alot of times it takes several months for the IVIG to help, and may require adjustments in dose and frequency. I know it is difficult, but rest when you need to and give your body time to adjust. We are glad to help answer any questions you may have.

i find your return to "normal" will sometimes depend on the amount of damage done by repeated infections over the yrs....i sailed along fine after dx until i got whooping cough the whooping left a lot of damage and was the straw that finally made it necessary to retire on disability...before that i was doing ok working full time as a teacher....

i also developed auto immune issues...sjogren's and RA....

i also noticed that before dx i would have "flare ups" times when i was worse and better....so dont give up this may be a time when things 'flaring" and things may settle down with treatment and time....

in jan 2010 when i got whooping cough i was unable to drive and get out of the house on my own for nearly a yr (almost didnt make it out of that mess!) now almost 3 yrs later i am doing much better..a simple trip to the store doesnt require a 3 hr nap now...so i measure progress one small step at a time....

my daughter with cvid is a 3rd yr pharm student...after a very difficult 5 yrs of undergrad she is doing much better..she like me has had "flare ups" throughout life when she is better and worse....

so there is always hope!!!!!!!!!!!!

Hey VT, Hang in, Like Kelli said, everyone is different! Best advice is to get your info and advocate for your self! If you are near Fletcher Allen go to the hospital library and ask to have some one look up the info. Because they are a teaching hospital, they have access to UVM research. I found this to be very helpful. I could not take the garbage out without stopping to take a breath last year and now that I receive IVIG and some other stuff I take a weekly Zumba class that is over an hour and never have to take my inhaler first! Who is your dr?

Thanks for your replies and sharing your experiences. Greatly appreciated!

I'm new too the diagnosis as well and have not yet "decided" if it is to do .Have had the second and third at this point opinion ...denying what is inevitable,I guess.Not liking all the research results,tho.So, any here who have been undergoing the treatment (infusion) a while?

I've been on them about 4 years, both IVIG and subcutatneous. It has DRAMATICALLY changed my life. I was SO very sick before with bronchitis, sinus infections and double ear infections, all at the same time at least 10 times per year. It took awhile and the change was gradual. It is part of my life like doing the laudry. Once a week I dread it but I MUST do it haha!

been on igg since 2007...

I've been on IVIG since March 2008. This is the first fall I have not had pneumonia and bronchitis. No infections now for several months.

I've been on IVIG since early summer and have drastically improved my life! Last winter I couldn't take out the trash with out stopping to take a breath but now I can take Zumba classes! I struggled with the diagnosis and treatment for a while, sort of denying the whole thing and was pretty scared about treatment. So glad I choose to go ahead! Everyone is different so good luck:)

Woops, that was meant for another discussion!

I can't really give you any insight or answer your questions since I am new to all of this too, I just had my first IVIG treatment Dec 10th, but did want to say welcome, there are some really supportive and friendly people here on the site, and I think you will enjoy the comradeship with people who actually know what you are going through. (hug) Cindy

Been on IVIG for 17 years. I feel the best i have ever felt because i finally have the BEST doctor in the country reguarding this diagnosis. I am getting a higher dosage and I feel GREAT! Before i was only getting the manufacturers suggested dosage and i was tired all the time, sleeping all the time. So (for me) the correct dosage has prevented the infections PLUS helped the fatigue immensely, and i am so very GRATEFUL, i wish for everyone to get the best treatment possible, so BE PATIENT and give it AT LEAST 8 months, but whatever you DONT GO OFF IT UNLESS your body cannot tolerate it, then thats another story. You will get better. My trough levels are now 600 at the end of the month versus 300, and it has made a BIG difference.