My IVIG treatments finished on Monday, June 27th and my one-week blood draw was this past Tuesday, July 5th. I called my hematologist’s office yesterday morning and they had the results of the CBC from LabCorp already. To my surprise, my hemoglobin went up to 11.6! Even though my Prednisone was decreased to 75mg, my hemoglobin went up…? Can that really be true?! Ecstatic doesn’t even begin to cover it. The hemolytic anemia was, originally, the worse of the two problems. It was the AIHA that caused my jaundice and elevated bilirubin and landed me in the hospital in May. I am VERY excited that the AIHA is essentially in remission at this point. It will still need to be monitored as I continue to taper off the steroids, but I am no longer worried about it.
My platelets, on the other hand, plummeted again. My last platelet count was 159, which was great considering 150-450 is considered the normal range. Fast forward to this week and my platelet count was 62. In case you don’t feel like doing the math, my platelets dropped 97,000 in eight days. That’s not ideal. I had read that the problem with IVIG is that it is often a quick fix, but a lot of times doesn’t work long term. The infusions are meant to give you a large boost in platelet count, but then it is up to your body to continue producing platelets and to know not to kill off the good ones. I think if there was an underlying cause to my low platelets, such as alcohol consumption, drugs, etc., IVIG and abstaining from the problem substance would have been enough to fix it. Take away the problem – take away the destruction. Then it simply would have been a matter of infusing the platelets and PRESTO! Since my problem is ITP, which, by definition, is an autoimmune disease focused on platelet destruction with no underlying cause, my treatment options are more trial and error. The infusions worked to boost my platelets, but my antibodies are still latching on to these platelets and marking them for destruction. Until/unless my immune system can begin to recognize its own healthy platelets again, I’m not super confident my numbers will ever be under control. It seems ITP is going to require constant maintenance.
The thing that I find really frustrating is that, of the two autoimmune diseases that comprise Evan’s Syndrome, ITP is the one that is harder to recognize or diagnose. With AIHA, I felt sick and miserable and tired and weak. With ITP, I just bruise easily. I don’t feel sick, I don’t feel broken or weak, and yet, I’m undergoing long treatments and being kept home from work. I know I’ve said it before, but it is so hard to grasp the concept that I’m sick but don’t feel sick. The idea that my body is destroying itself without any indication is frightening. How am I ever going to know if my platelets are low without a blood draw? I won’t. At least with AIHA, there is a chance I will be able to notice when something is wrong (to some extent). I’m afraid with ITP that I’ll never know there’s a problem until it’s too late.
When I see the doctor Monday I find out what comes next. He’s probably going to recommend a bone marrow biopsy (no, thank you) or another round of IVIG infusions (not loving that idea either). Hopefully he doesn’t immediately jump to Rituxan (the chemo-like treatment). If I had to guess, I’d say it’s likely that there is more IVIG in my near future, but maybe he’ll try a different route considering the reaction/side effects I had by the final treatment. Maybe he’ll say 62 is a safe enough number and he will hold off on any additional treatments and let me wait it out to see if the number holds! Either way, at least half of the ES is under control and responding to treatment the way it should be. One down, one to go!