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sassykitten93 (@sassykitten93)

Hypogammaglobulinemia

Autoimmune Diseases | Last Active: Apr 5, 2021 | Replies (56)

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@xfirerose

@kananab thank you for replying. I am currently being assessed at UCLA for a MAC infection of the lungs. They are also going to start treating me for my CVID. They think I may have more things going on in my lungs besides the MAC. I also have Bronchiectasis. They want to change me from IVIG to SCIG. We are having problems with that because there is a blood shortage. I am waiting for tests. I am having a hard time producing a sputum sample. Finally somewhere to find out more about CVID.

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Replies to "@kananab thank you for replying. I am currently being assessed at UCLA for a MAC infection..."

Hi, I was diagnosed with MAC at UCLA too- in 2018. My doctors there were really good. I've left since then, bc moved. As you probably know, MAC often comes from bronchiectasis plus some underlying immune problem. I had bronchiectasis , and then they checked my immune globulins and turns out I had low IgG. I had tests on my reaction to vaccines, and have now been on weekly scig for more than 2 years the I administer myself. Easey peasey. And I hated needles before I started– but I hated the idea of going into a strange place and having a nurse infuse me even more. . In the last year, my chest CT scans have miraculously started showing lung nodules are going away. Ive had lung nodules for 15 years. (I have 15 years of chest CTs because I had 2 malignancies and the lung nodules caused docs to follow them– records show nodules waxing and waning, but they are really getting better– I am convinced it is the IgG Im taking. ). BTW, My immunologist said I had CVID but when I went to another place for checkup, the new doc said she wouldn't treat the low IgG or put me on scig, apparently didnt like idea of infusing from pooled blood supply — but I am convinced it is what is making my lungs get rid of nodules. It is the one thing that has changed in my life. The scig, and now nodules going away.

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