Rituximab, CD19, Hashimotos encephalopathy

Rituximab, CD19 and Hashimotos encephalopathy 

I just got the results of my most recent CD19 test. Normal range for this test is between 6% and 19%. Twelve weeks ago my reading was <0.1 (almost none). Today’s results are 2.85%, so my immune system is reactivating. For most people that’s a good thing—but not for me. My doctor has ordered another round of Rituximab.

CD19 is a test that shows how many B cells are in the blood.

B cells are a type of white blood cell and part of the immune system. They produce antibodies when the body needs to fight an injury, infection, or disease.

In March I was given Rituximab. Rituximab is a powerful immune suppressant that not only inhibits the body’s ability to produce B cells but also actively seeks out and destroys them in the blood.

Hashimoto’s encephalopathy (the condition causing my neurological problems) is an autoimmune disease where my immune system misidentifies nerve cells as invaders and attacks them.

Since my treatment in March I have seen a marked improvement in my health, and the treatment appears to work. But now, as the B cells start coming back, they will start attacking again—and we have to prevent that. So, time for another treatment.

There are some major problems. The first, I think, is obvious. Without B cells, my body is vulnerable to other diseases—including cancer. In a way this is like having a mild case of AIDS, and I have to be hypervigilant about exposure to disease. Also, the fact that I still have cancer is not good. But I do not want to be a blind, mentally retarded quadriplegic with Alzheimer’s—and that’s the path I was on before the treatment.

The next problem is related to that. I have tried other immune suppressants in the past, but they were in pill form and taken daily, so if something went wrong—if I developed an infection—I could be taken off the medication quickly. But they did not work for me. This treatment, on the other hand, lasts for six to nine months (looks like six for me), and there is nothing that can be done to clear it from my system during that time.

Another problem is simply time. For me, one treatment takes four days off work—or eight days a year. Thank goodness I have twenty days off a year. Normally, a treatment only takes two half-days, so I would be able to work in the morning before the treatment, the way I did with IVIG, and would not need to take time off work.

But I do not tolerate this treatment well. If they try to put the treatment into me too quickly, I develop a severe allergic reaction—itching, rash (even in my throat), breathing problems, chills. So instead of two half-days, this takes four full days. I wish my insurance company would let me check into the hospital overnight; then they could give me one treatment a night (it takes about 10 to 12 hours of pumping), and I could go to work in the morning.

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