For an overview of my disease, please click this link... The Beginning...The 7 Month Journey to a Real Diagnosis
On October 11, 2011, I met my Specialist Dr. S. Grando of UCI -- an amazing physician and scientist with tremendous knowledge, insights, and research experience with Pemphigus Vulgaris. He is really the one who wrote the book on this disease and I know that I am in the best of hands. This meeting was very different then the last one... It was confirmed that I had P.V. whereas before it was simply strongly suggestive. He was most gracious... and answered every question that I had.
So, P.V. can be controlled. But its the mechanism of control which utilizes high levels of steroids ifor longs periods of time (2-3 years) is where the problem is. The side effects of suppressing my auto immune to reduce the flare ups of P.V. will simply make me susceptible to other diseases. So, the goal is to get of prednisone as quickly as possible. Here is the best part! I am going to be on a clinical research trial where there is a great chance to reduce my Prednisone dosage down in a year! If this works... and the fact that I am perfectly healthy otherwise, I am going to be just fine!
This new clinical research utilizes a well known drug called Sirolimus. It is used in combination with other medications to prevent rejection of kidney transplants. Sirolimus is in a class of medications called immunosuppressants. In P.V. patients, apparently it will allow the slow reduction in dosage of Prednisone to nothing.
So, Looks like I am going to be on it... in November, 2011
So far, I am doing great... no side effects at all. The sores/blisters in my mouth are getting much better. I am have been on Liquid Diet since Late August and still am. But I have been told that I should be able to eat solids in 2-3 weeks. Cant wait! :)
On the whole, my case looks pretty good. Other than P.V., I am extremely healthy and all my lab results are great! Heck, even my Cholesterol levels are perfect. Good thing I did not inherit heart disease which is so prominent in our family among the men.
So, the Treatment right now consists of 60Mg Prednisone, 3 x 500Mg of Tetracyclin and 3 x 500 Mg of Niacinamide daily. Not too bad... Zero side effects.
Moving Onwards and Upwards to Great Health!