Next step advice?

I was diagnosed 12 years ago with ITP while pregnant with my youngest and never had any complications or interventions until three weeks ago when I ended up admitted with a platelet count of 3. Was immediately put on 100mg of prednisone and when I didn't respond stated IVIG treatment. Platelets rose to 198 at the peak ... Have remained on high level of steroids and then tanked again this week to 9. I have to make a plan for next steps (only rose to an 18 after half a treatment). Rituximab is being recommended to start soon -- advice or feedback? I'm still in shock and having a hard time absorbing all of this. I'd be appreciative of any advice or suggestions.

Rituxan is probably a good next step, although there are other options. Promacta and N-Plate are also something that you could look at as possibilities.

Few people have side effects with Rituxan and most do fine. The infusions can be boring since they give you pre-meds and those can make you sleepy. Some people have a slight reaction during the first infusion which can be controlled by slowing the drip.

If you're going to have a bad reaction to Rituxan, it's usually during the first dose and usually at the beginning. The infusion nurses keep a close eye on you the first time around. The first infusion may take longer (six to eight hours?) because they're going slower to be careful. If you have no reactions the first time around, your next few treatments will go a lot faster typically. I think the fastest I got one in was just under four hours.

And Sandi is right, you'll likely be knocked out by the pre-meds. I slept through about half of each infusion - usually while listening to a book through some headphones. Also, take some snacks to munch on. I also liked to keep the infusion nurses happy, too - asked what they liked to snack on so I could bring them stuff.

The mild reactions are typically sore throat, etc. I had just a little of that my first time but nothing more.

One more thing I also learned: there's always patients in an infusion center going through worse things than ITP. You gain perspective quickly by observing them and how they approach their treatments.