IVIG's and common variable immune deficiency

Discussion in 'Fibromyalgia Main Forum' started by IntuneJune, Jan 26, 2009.

  1. IntuneJune

    IntuneJune New Member

    I posted this some time back....

    I have CVID and have received IVIGs..... yep, my FM symptoms did get better. Under the umbrella of primary immunde deficiency diseases (you can google this) there are many conditions listed. So lab valves will vary depending on the condition with treatments being intravenous immunoglobulins.

    I received about eight, one per month, then treatment was interrupted because the doctor's office was not on top of the paper work. The doctor is outstanding however it is his responsibility to have an proper organized office staff.

    The result of not receiving IVIG for four months was being sick for Christmas and we had traveled a good distance to see our grandchildren. Simply not fair.

    The IVIG has been restarted, only one infusion so far. The fibrofog got a lot worse and is still thick, the exhaustion which improved is back and I did have a few good days after the infusion.

    Others have been found to have immune deficiencies, some receiving IVIGs, please post how you are doing????BR>

    Fondly June
    [This Message was Edited on 01/27/2009]
  2. IntuneJune

    IntuneJune New Member

    Knowing there are folks on the board receiving IVIG, I am hoping to hear how they are faring. TXFMMOM was one. She posted a few months ago......

    For all FMers, please have your immune system checked thoroughly..... IgG levels are not enough, subclasses should also be studied. These are not done routinely. The doctor needs to request this, my blood samples are sent to Mayo to be done as the hospitals and labs in my state do not perform these tests.

    No this is not the answer to FMS, but treatment helps FMS symptoms. Also the frequent sinusitis (requiring antibiotics, bronchitis, pneumonia episodes stopped. Google PIDD or primary immune deficiecy and PLEASE respond to this post.