Common Variable Immunodeficiency is a group of 20-30 immunodeficiency disorders with a common set of symptoms but different underlying causes.
I have hashimotos and extremely low vitamin D. I am fortunate to have a Dr who worked at NIH before switching to west coast. He saved my life. I had total thyroidectimy in 2007 they found papillary carcinoma follicular variant. I have 5 children 2 have hypothyroid one has hashimotos. ..I also have celiac disease and 2 children have gluten intolerance or gluten sensitivity . IVIG was first round for me. . Had 2 yrs felt good rest felt sick. Hizentra which is immune globulin you do subcutaneous infusions you do at home has been life savor since stopping a IVIG which is super expensive. My Immune Dr is amazing and is so knowledgeable. .. what Dr calls you to check on you to make sure you are functioning. @phelpspam what state do u live in? If you don't want to disclose email me and I can give you this extraordinary DR who will not give up til he figures you out:) He us an extraordinary DR. More later Don't give up and don't settle. Go with your gut trust and MD who listens to you. I have been down guinea pig row 25 plus yrs and finally got EDS III diagnosis plus CVID which I had diagnosed years ago. Don't give up. Stay strong and keep asking questions. I have severe stomach and gastrointestinal issues so do 2 of my children diagnosed as well with IBS. TAKE CARE ASK QUESTIONS AND DON'T SETTLE. You can live a full life and overcome your circumstances Don't give up. Keep on :) hang in there. YOU ARE NOT alone!!!!!!!! Check Hizentra it's at home immune globulin therapy much cheaper than IVIG AND don't was six months...blessings to you
I am not actually receiving treatment yet. I was diagnosed with CVID about 3 weeks ago by an immunologist. I also have Hashimoto's. I have a lot of stomach problems and pustular psoriasis, so my dr. tested me for Celiac. It was negative but he noticed my Vitamin D and IgG was low. He ran more tests and found my IgA was low too. I have built up antibodies to about half of the pneumonia vaccine strains and have responded very well to tetanus vaccine. However, he explained that I may have had the vaccine before CVID. He is concerned insurance wouldn't cover IVIG. He suggested I come back in 6 months to be retested and see where my immunoglobulin levels are before starting treatment. I think he is trying to build a case for insurance coverage. Is IVIG inevitable or is it possible to avoid treatment? I have been more sick in the last 4 years than I have my entire life. Although, I generally try to tough it out because my doctor is hesitant to write scripts, plus I feel like a hypochondriac sometimes. Is it better to have treatment even if the symptoms are not severe? I would say my symptoms are not life threatening but I wonder if I would feel better and have less illness. I would like to hear about others experiences.
Yes, there is somebody out here. Thank you for asking..... I am curious if anyone else is on Hizentra. I switched from IVIG back in 2009. Infusing at home is a blessing and I no longer have my veins blown and get sick for days after IVIG. I also have Ehlers Danlos Syndrome Type III which further complicates my CVID. But the Hizentra has kept my levels in a normal range and I very rarely get an infection unless I have surgery.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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