Hi barb sorry to hear you were diagnosed with CVID. I was diagnosed in December. I really didn't have a lot of infections myself just felt very tired and some joint pain (autoimmune symptoms). I really minimized and rationalized the heck out of how I was feeling. It was much worse then what I let myself believe. I started out on IVIG and did that for several months. I did ok with it just had headaches but I am a person who has very frequent headaches.

I am an RN and I was and still am over whelmed by all this. Some days I feel pretty good about it all, some not so much (like yesterday) there are resources with My IG Source, IDF.com, IDF has a list of meetings that might be in your area. You can request printed resources be sent to you by IDF.com. I have a stack of information that has been really helpful for me. To me knowledge is power. My IG source has peers who call you and provide support. (Forgot what the call them exactly).

I switched to sub q end of March. I do overall feel better doing sub q. I wouldn't say I like putting tiny little needles in my belly area but it's not to bad. Too me it's worth it because I can do things I couldn't before. Workout without almost passing out, get down on the ground and play with my Kid!, do my regular activities without having to pause to rest (folding laundry, climbing stairs). I figured since my immune system was going crazy and doing whatever it wanted including attacking me that it was better to get treatment.

But ultimately that is up to you. My doctor also said that being on continuous antibiotic was an option. I have had c diff. Several times so I didn't want to do that.

I developed what my doc called poly arthritis about a month before being diagnosed with CVID. I have to tell you with optimal treatment, my pain is now manageable. It was so bad in the beginning but has just continued to improve over the years.

Please check out our communities support resources such as The Immune Deficiency Foundation at primaryimmune.org or call and ask for the resources and speak to a patient advocate at MyIgSource at 855-250-5111. MyIGSource has started having patient meetings as well. I'm actually going to one in the morning in Valencia.

I too have also been recently diagnosed with cvid. I am also an RN but this truly overwhelmed me at first. My patient advocate fro UNMC is awesome. Of course I researched things and my doctor told me be careful with what is out there on the Internet. I have been doing subs infections for six weeks now and can say I definitely feel better after my infusions. I agree the needle part kind of freaked me out even as a nurse but really they are easy. I like to do mine in the evening while watching tv and then go to bed early due to the fatigue. I wake up feeling lots better and no headache. Good luck with whatever you decide is best for you!

Thank you for the encouragement.
I went to the rheumatologist and she diagnosed me with polymyalga rheumatica and is going to keep me on a low dose of prednisone. This means I will be doing the IG therapy. I think I will start out with IV at this point. I know my insurance covers it I just don't know how long it takes to get the ball rolling.
B