Reply To: Any specialists in Prescott/Phoenix for CiDP with government insurance?

The following article is written by Jim-LA a moderator on this forum and a fellow CIDP

CIDP is where the autoimmune system remembers how to make antibodies that attack “self”. The condition can lay dormant for years before being triggered by some virus like Shingles or a flu shot. When triggered, our systems can produce antibodies that go on the attack to remove invading organisms from our body. In doing so, they can attack parts of the body itself, usually focusing on soft nerve fibers such as Myelin. This causes weakness and loss of muscle control, burning and shaky muscles.

Here is a summary of the types of cells involved:
• B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other “non-self” foreign antigens.
• T lymphocytes (T cells): Some T cells help the body distinguish between “self” and “non-self” antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
• Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.

IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).

One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used. However, when a CIDP attack reoccurs, IVIg or Plasma Exchange is usually given to stop the initial severity of the attack.

It sounds like the bad antibodies are still very active inside you. That could account for the numerous symptoms you have described. I experienced all that stuff when my disease was still very active. I had a combination of GBS/CIDP/MFS. The MFS piece seemed to take control of my head; the GBS piece had its way with my extremities. The symptoms you describe bring back awful memories.

For me, IVIg did nothing. I had it for several weeks and my symptoms continued to worsen. It wasn’t until I started PE that I started to return to a more normal state. The symptoms began to diminish following PE. If you haven’t been treated with PE perhaps that is worth discussing with your neurologist… right away!