PIDD

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    How can we reduce time to PIDD diagnosis?

    Hi all -- I'm new to the group, looking for ways to raise awareness & help reduce time to diagnosis so that fellow PIDD patients don't have to wait so long to figure out what is going on. I'd love to hear a bit more about your pre-diagnosis stories if you're willing to share and what you think would have helped/what you wish would have happened in the first place - feel free to respond here, or send me a message directly. Thanks so much!!#PIDD #PrimaryImmunodeficiency

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    Primary Immunodeficiency: My experience then and now

    I have CVID. I was diagnosed in 2005 at the age of 46, after having lived with infection after infection beginning in infancy. In the year prior to diagnosis, I was off work due to sinusitis, bronchitis and pneumonia a total of 18 weeks; good thing I had a union job and my company couldn't fire me. My respirologist (aka pulmonologist) clued in when I was seeing her for my semi-annual checkup and she asked about any upper respiratory infections I had in the previous 6 months. She knew right away why I was getting sick so often and sent me off to an immunologist who diagnosed me. In British Columbia, IVIG is classified as a drug as well as a blood product and must be approved by the Ministry of Health's Pharmacare division. Approval can and does take weeks before the patient gets the first infusion; in my case, it took 5 months for approval to come through.

    IVIG is sometimes referred to as champagne. First because of all its bubbles as it moves through the tubing. Second because it is almost like a wonder drug. It was wonderful not getting sick all the time. I still got the flu despite vaccination, but it was nowhere as bad as in previous years. I still occasionally get bronchitis, but it nowhere as frequent nor as severe as in years previous to diagnosis.


    About the IVIG shortage? We are experiencing it to some extent here Canada. We don't have sufficient blood donors to supply all of the IVIG needed by Canadian patients, and must rely on the United States for part of our supply. Unlike the US, Canada doesn't have any centres where people can sell their plasma for a fee.


    IVIG brands are not interchangeable. I normally get Gamunex-C, but for a few weeks, I got Privigen instead. With Gamunex-C, I do get a mild transfusion reaction, for which I get Tylenol and Benadryl just before each infusion to counteract any reactions. With Privigen, I had to get an additional dose of Benadryl partway through. I'm back on Gamunex now but have no idea how long it might be until I am given a different brand of IVIG.

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