Plasma Exchange Update, October 14

We talked with Dr. CL around noon today. He is pleased with the progress I am making with the plasma exchange. It does help, but for how long?

I am still a "unique" case (OK, use weird if you want too). All of my current diagnosis are still valid, but not text book. The diagnosis are the best fit for what is happening to me.

Long-term is our concern now, so here is the game plan.


The prednisone will be reduced to 30 mg per day over time. Ideally, we can get it lower eventually, but I will probably be on low dose prednisone for a long, long time. I have not responded that great to the large doses of prednisone so it's time to lower the dose.

I will continue with the other medication as directed. They do give me some relief.

I will have a follow-up with pulmonary doctors at Vanderbilt for further evaluation of my breathing problems. I am breathing some better, but still have problems on exertion.

I still have the chest pain, I do not notice much difference with the lidocane swallow. I will reschedule my endoscopy with Dr. Schmidt when I get home. I chose plasma exchange over endoscopy.

I will start a new medication in about a weeks called CellCept. This is is an immunosuppressant drug used to prevent rejection in organ transplantation and also a very mild chemotherapy. It "may" slow the progress of Myasthenia Gravis--so bring it on!

My blood sugar has been fairly normal, but was up this afternoon. It was 210 so I had 4 units of insulin. (The ice-cream sundae was worth it.)

I will also do IVIG infusion the next time my symptoms get worse. This may help reduce the need for plasma exchange and can be done locally in an infusion center.

Heading home on Friday!