I wanted to add in mine two cents, because I had a really positive experience with Rituxin.
I was diagnosed & hospitalized just over seven months ago with a count of less than 3,000. The first course of treatment was (the much dreaded, for me) Prednisone. Prednisone initially raised my counts to be between 20 - 50k, which allowed me to be released from the hospital. However, when I started to taper (reducing my dosage by 20 mg, every other day), my counts plummeted again -- which resulted in me getting an IVIG and starting up on Dexamethasone (a 4 day on, 10 day off pulse). I slowly, slowly started to taper off of Prednisone while on the Dex, after we determined the Prenisone was not effective for me. The Dex was an interesting one. It raised my counts significantly for the few days following the pulse, but in the few days before my next pulse, my counts would significantly drop. In the meantime, the side effects of being on two steroids at very high doses was wreaking havoc on my body (including a staph infection in my ankle which resulted in a wound that took over five months to heal -- and by heal, I mean not be a gaping hole on my leg).
At the end of December, my counts once again plummeted from over 200k to under 20k in a matter of days, and my Hemo decided we were going to move on to a new course of treatment. I got the Splenectomy talk, which isn't something I am necessarily opposed to, but I am of the frame of mind that I want to try pretty much any other treatment I can before doing surgery. I was presented with a few other options, which I can not remember at the moment, but I ultimately decided on the Rituxin.
It was a bit scary to think about taking a chemotherapy drug, but the actual process was very low key. I did have a reaction to the drug during the first treatment (incredibly ichy scalp and swelling of the throat were what I noticed before I was pumped full of allergy meds), but it wasn't a very big deal. Due to the Benadryl they give you prior to the infusion, to stave off potential reactions, you pretty much sleep the entire time. My first infusion took almost 10 hours -- the reaction caused me to have to stop the infusion for over an hour to ensure that the allergy meds had kicked in and my vitals were normal -- and my subsequent infusions took about 6 - 8 hours. However, if you don't experience a reaction, it is my understanding that the process can be speed up in your second - fourth visit, so you wouldn't need to spend hours upon hours upon hours in the infusion center.
I never felt sick due to the Rituxin, but I definitely experienced hair loss. Thankfully, I have a LOT of hair -- so I still have a lot. I'm no where near balding. But, when I brush my hair out post-shower, I am still noticing a lot of strands coming out -- about half a brushfull each time.
It has now been a month and a half (exactly on Friday) since my last Rituxin infusion, and while it took about a week after the last infusion for the effects to truly take place, I have not had a platelet count lower than 250k. Prior to Rituxin, I might have reached 250k once or twice -- on the days immediately after a Dex pulse, but I would never maintain that count. Now, I'm maintain that count and higher counts -- even on the last day before starting my next Dex pulse (yes, I'm still on Dex -- although I'm tapering down).
I am hesitantly considering myself to be in remission, or moving in that direction, and I consider Rituxin to be what caused it. Therefore, I am a big supporter of trying out this option. This is also due to the fact that I had a very negative experience with steroids (Prednisone and Dexamethasone). I used to joke that once I got diagnosed with ITP, my luck turned on me. Prior to the ITP, I was naturally a strangely lucky person -- winning lots of random things. Once I was diagnosed with ITP, it seemed like I became inflicted with every potential steroid side effect a person could have. For me, it wasn't a matter of "if," it was a matter of "when." That, in addition to the fact that neither steroid was able to maintain me on a decent platelet count, left me feeling very unsatisfied with that form of treatment.
Each person has to make the decision for themselves, though. One of the most important things I have been learning, upon being diagnosed, is to advocate for myself. Reading these boards has made me realize, even more, how important that is. Your Hemo can offer you advice, but with a disease like ITP, where there is no one cure that works for everyone, a patient really needs to make the decision that is going to be the best option for them.
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