John’s latest tests with ITP

We took John in for his blood test early this past Monday because he was showing physical signs of low platelets again (petechiae). Sure enough, his platelet levels had dropped to 39K. This time we moved on to steroids as a treatment – a short four day course with a high dose.

The goal was to test his platelet reaction to steroids and to get him back up above the 50K range. Steroids have the benefit of being administered as a simple pill – no hospital visit needed. The bad side is that they have some strong side effects. Moods, aggression, weight gain, etc. John’s appetite didn’t seem to change but his moods have. He’s just unhappy and grumpy – quite disagreeable at times (like this morning). But also even when he’s not being aggressive he just seems sad. Some good new then? Yes.

I just came from the doctors where John’s latest blood test showed that his platelets had rocketed up to 237K from 39K. That’s the best one-time rise we’ve seen in his results.

This doesn’t mean much however other than he responded well to steroids. Our expectation (and the doctors) is that his platelet levels will start moving down again and the question is how much and how soon. This game continues until his body heals itself or it doesn’t. We won’t get a diagnosis of chronic ITP until we’ve passed the six month mark with no permanent improvement.

The Doc started preparing us Monday to move on to another form of treatment called Rituxan. It’s a heavy duty drug used in chemotherapy and more experimentally with ITP (with good results). It does have the riskiest side effects that we’ve encountered in any of John’s past treatments. They actually administer the drug in the Intensive Care ward. This doesn’t sound so hot to Shannon and I.

The upside is that this drug has been known to actually cause a remission in ITP – something that the other drugs don’t really offer. Shannon found in her research that in Europe they don’t even treat ITP as aggressively as we’ve already done with John until platelets reach 5K! Here in the U.S. anything below 10K is grounds for hospitalization due to concern over spontaneous bleeding (at these levels it is possible to bleed to death without even having gotten so much as a bump). Once again, our experience just keeps reinforcing that modern medicine with ITP is basic trail and error. Let’s try A and see if that works. If A doesn’t work try B and so on. That’s what gives us pause in using something like Rituxan. We’re both in agreement that we need to do some much more in depth research and soul searching before we’re ready to go this route. Shannon made a good point this morning in saying that maybe we hold out (like the europeans do) for his results in six months and then cross the bridge then if we get a ‘chronic’ diagnosis.