Today the doctor’s office called a little after noon and asked me to come in for a CBC blood panel to check my platelet count resulting from Tuesday’s transfusion. Within ten minutes I had grabbed an Uber and was on my way to the office. They took two vials of blood and then I met with the doctor. My hemoglobin went up to 10.7 (half a point increase), but my antibodies test came back positive, which means antibodies are still latching on to my healthy RBCs and destroying them. This was further solidified by the fact that the doctor said I’m still in hemolysis. I am hoping the IVIG will still be just as effective while in active hemolysis. I would hate to know what my hemoglobin would be at without the Prednisone. Somehow, with the Prednisone, it does seem to be going up!
My platelet count from today was up to 31,000, which makes perfect sense. The doctor predicted with the one unit of platelets that my count would rise from 13 to around 30.
The plan at this point is to stay on the steroids and hope that insurance approves the IVIG treatment late today or early tomorrow. Not sure when the tapering off will begin so I am trying not to worry about it. The doctor and his staff keep repeatedly calling my insurance company for approval, which is nice. It’s nice not having to do that myself. Assuming it is approved by end of day tomorrow, the office will call me and set up a time for me to come in on Monday for my first dose. Treatment will likely be Monday-Thursday, 9:00-2:00. I won’t know until the end of the first treatment if I am going to be able to work from home in the afternoons. The doctor said that 40-60% of patients, the majority, experience painful headaches following the treatments and spend the afternoon and evening lying in bed on prescription painkillers that he prescribes to help manage the pain. Here’s to hoping the pain isn’t too bad and that I am able to work for at least a few hours a day.
Also I asked the doctor a few of my questions:
Can I still fly to Chicago next weekend?
No. Because of the IVIG and the probable headaches, he doesn’t think it’s a good idea to be too far away or to take a plane.
If the IVIG doesn’t work, do we need to resort to Rituxan? If so, how soon will that be?
Since Rituxan can cause reproductive problems, it might not necessarily be the next step. He said he often tries IVIG a second time first, but that it isn’t worth talking about unless we need to take that step.
Was the large platelet drop due to my alcohol intake this past weekend?
Unfortunately, the answer to this was yes. He thinks the drinks I had at the wedding and the night before definitely were the cause of my platelet drop from 44 to 13. It sucks knowing I did this to myself, but at the same time, I thought maybe there was a small chance the alcohol would react with the Prednisone – I had NO idea that the alcohol would thin my blood and drop my platelets. I can’t beat myself up over an honest mistake.