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Is there anybody out there?

phelpsam Message
14 Aug 2014, 08:30 PM

I just signed up and noticed there are 139 members of the CVID community; however, it appears no discussion has taken place. I thought I would throw this out there to see if anyone participating.
lancastermtn Message
15 Aug 2014, 04:59 AM

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.
phelpsam Message
20 Aug 2014, 03:34 AM

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.
lancastermtn Message
20 Aug 2014, 07:08 AM

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