I was diagnosed with hypogammaglobulinemia as a child. A few years of daily antibiotics and I was better for a number of years. Now at 29 things have been much worse; last month I was re-tested and diagnosed with CVID. IGIV has been recommended and I'm headed to another specialist in May. I have all the normal chronic infections, but my question is about aches and pains. At times the joint pain is unbearable. In all honesty, I nearly abuse Advil and Tylenol, taking it several times a day, and my general practitioner advised that it could be causing some of the gastrointestinal problems. Does anyone have any recommendations? Will this symptom be relieved with IVIG treatment? I used to be on Vioxx and Bextra when they were on the market. I was tested for Lupus once, but that was negative. I also don't have arthritis. Any advice would be appreciated!

I am 49 and was diagnosed with CVID at age 48. The treatments have helped tremendously, however, I have also noticed that my joints ache all the time now. I haven't had any workup on this as yet, but the IVIG treatments have made a huge difference in me not getting sick. Anyway, I hope this information helps you. Hang in there.

Well.

I just finished by immune IV.

I was born with Hypo gamma goblun anemia.

I was told I wouldn't see 25 years of age.

Yep...Here I am. 52 years old and still kickin.

Yep...got the same issues ...but ain't nobody shooting at me nor is their bombs going off in my yard...I am grateful for my life.

I have been receiving gamma goblun all of my life.

Yep sometimes it is overwhelming.

Yep, sometimes you can't talk to anyone about it.

But. I have a healthy 14 year old son that is healthy as a horse and
I have been blessed with the ability to make a pretty fair living.

But. Life is a struggle.

Don't give up.

I pop alot of excidren and ibuprofen also....but basically I reached a point where they don't work to well.

Hot tubs work well. Hot water works well.

Lifting weights helps.

Well.. this is about all the fun I can take.

GOD bless and don't give up.

JumpinJack

My granddaughter was born with the same disease. She had acid reflux and had the surgery to correct it when she was 10. She cannot take aleve or motrin, only tylenol. She also has joint pain and was just diagnosed with Hyper Mobility Muscle Syndrome and Hyper Mobility Nerve Syndrome. It was diagnosed by her Rheumatologist. She also has OsteoPena, brittle bones. Right now she has a broken ankle [3rd one]. She has a long list of allergies, has had many sinus surgeries, many tubes put in ears, the list goes on and on. A total of 38 surgeries. Check with your doctor about the syndromes she has, you may have them too.