04/24/08 - Nuts!

Well, it looks like I have had a temporary setback in my positive progress of the last several months. On Tuesday 4/23, I went down to La Jolla to see Dr. Kipps (after 2 months), to get my blood test, and to have my monthly IVIG therapy. Things did not turn out quite the way we would have liked them to. Although I had been feeling fine, with no muscle weakness or major tiredness, the blood work showed that this was not the case. My hemoglobin came in at 11.1, which was about 2.6 less than the 13.7 it was on April 4th. We hoped that this was just a minor setback and so today I had another blood test to confirm it, and this one came in at 10.7. So, it appears that I am hemolizing my red blood cells again, and probably going back into Autoimmune Hemolytic Anemia (AIHA). If you remember from my previous posts, this is not uncommon, and happens more than half the time in patients. Mine just took a whole month to come back. Because of the decrease in red blood cells, they also decided to give me a shot of Aranesp while I was getting my infusion. Aranesp is a man-made form of a protein that stimulates the bone marrow to produce red blood cells. It takes about 1-3 weeks to have an effect, but they decided to stay ahead of the game and give me the shot anyway.

After talking with the doctor’s office today, it was decided that I will go back on the prednisone to see if we can nip it in the bud before it gets to the point where I would need a transfusion. The last time I started Prednisone my Hemoglobin was around 7.5, so I am much higher than I was back in November. This course of Prednisone will start off high, but if everything goes the way they think, I may start tapering off the dosage as early as next week. The doctor wants to keep me on Prednisone for as little time as possible. I will go in for a blood test on next Tuesday (4/29) to see if the Prednisone is working, and weekly thereafter.

There are still some issues that need to be dealt with, such as why did I start hemolizing my red blood cells. Bottom line right now, no one knows. There is also a possibility that I could become steroid resistant, and it would not work as it did before. If it keeps coming back, then we need to look at some other alternatives. Since the bulk of the red blood cells are killed by activated macrophages from the spleen, one drastic way of controlling AIHA is to remove the spleen surgically. This seems a little drastic to me, and I would like to keep all my body parts if possible. Another option is to have another round of Rituxamab with high dose steroids. According to Dr. Kipps this alternative has a high success rate, and in some cases can put you in remission for a year or two, and gets rid of the AIHA.

As you can see, this is not something where you just put together a ‘standard’ protocol, and everyone goes on their merry way. If I were being treated somewhere other than UCSD, I am sure they would have a different list of protocols that they would use. I know this may be too technical or too boring for some people, and I apologize, but if you are interested in a more detailed description click on the AIHA link on the right hand side of the page. It will definitely make your head spin.

Hopefully this will work, and I can move on to the next step. I must admit this week was an emotional letdown. Physically I am actually feeling pretty good and have played golf 7 times in the last 2 weeks. I am hoping and praying that this is only a temporary setback and I will be able to move on to the next step shortly.