Promacta this soon???

I've posted here a few times, but not in a little while and I'm looking for some input/advice. Quick background-was diagnosed with ITP in Decemeber 2009, took prednisone for three months before weaning off. Counts always hovered around 80-100, then went as high as 200 in April of 2011. Things were looking great. Yay. Then my husband and I decided to have a baby. Here's where it took a turn.

By July of 2011 (at 10 weeks pregnant) my count had dropped to 18. I was immediately placed back on steroids (60mg). It raised my counts up to around 60. My hematologist wanted to keep me at 60mg of the prednisone. I thought she was nuts. I got a new hematologist.

New hematologist is great. Let's me have a big say in my treatment. We lowered my dose of steroids down to 20mg and tried IVIG. It didn't work. For most of my pregnancy I was on anywhere from 20-40mg of steroids. Tried IVIG again. Platelets went up and came down quickly. Hematologist wanted me to try Decadron, I said no. A few weeks before my due date my counts dropped to 15. She decided to try IVIG one more time and my count went up to 117. I was induced a few days later (platelets had already dropped to 79). Luckily, I was able to get my epidural. However after delivery my platelets were only 50. They transfused me before they would remove the epi catheter. Unfortunately, my antibodies also crossed the placenta. My little guy was born with a platelet count of 16. He spent 9 days in the NICU where he had two transfusions and 4 rounds of IVIG and was subsequently placed on prednisone (his counts went up and down a few times). After being released his counts dropped again and he was readmitted to the hospital (twice). He spent 17 days out of his first month of life in the hospital He's now 11 weeks old and his counts have FINALLY stablized (262 this week!!) and they are confident my antibodies are out of his system.

Back to me. My count dropped once after delivery (the first time my little guy was readmitted to the hospital). I had mastitis and was hospitlized myself, and they believe the infection caused my platelets to drop (down to 24). I received a round of IVIG and my platelets went up to 375! I was AMAZED. My hematologist was confident that things would go back to normal now that I've had the baby. Well here I am, covered in petichae with a count of 18. Super. My hematologist is pushing a splenectomy, based on the fact that I want to have more kids some day. I'm not really on board with this. I like my spleen. She understands I'm "not ready now" because I have a small baby at home, and in the mean time would like to place me on Promacta. Doesn't this seem a little odd since I had such a great response from IVIG the last time? (Granted my count went back down after a month, but isn't that standard with IVIG?) I understand short term there are no great side effects with Promacta, but I'm nervous about the unknown long-term effects. Is it weird for her to jump to this as my next option? I've been reading this board and see that some doctors are hesitant to prescribe it at all, so I'm curious I why she would prescribe this without trying anything else. Any thoughts??

Any thoughts?

Since you asked, yes! I wouldn't consider IVIG a good solution. It's pretty much known as a rescue treatment; not one to count on for any long term use. Sometimes it only lasts a week or a few days. Do you really want to be hooked up to an IV that long, that often? It can also become less effective over time, which knocks it out as a viable treatment. It's also expensive. I don't really know of anyone who uses IVIG as a maintenance treatment unless it's the only thing left that they respond to.

Okay, next, I have to say this before we discuss other options. What is your goal? The goal can be to attain remission or the goal can be to maintain decent counts. I think you need to figure that out before choosing the next option. Sometimes with ITP, people realize that just keeping counts around 50 is good enough.

If the goal is to attain remission, your options could be Rituxan or splenectomy. You'd have to be hooked to an IV once a week for four weeks with Rituxan, but if you respond well, you could get a year or more of great counts. Then there is splenectomy. I don't blame you for not wanting to go there. There are a lot of things that can crop up from that (recent research shows) and I can give you links if you are interested. It's also not a definite solution since it fails so often.

If your goal is to just maintain counts around 50, Promacta wouldn't be a bad way to go. Some people here have been using it for a few years and are doing quite well. I don't think it is a premature option. It's easy - just a pill. You wouldn't have to do it forever....just until you decide what to do next. Some people spontaneously remit and that could also happen to you.

Since the baby is only 11 weeks old, it could also be that your hormones have not yet recovered. I wouldn't expect your counts to go up yet. That can take months.

I'm sorry that you and the baby had such a rough time, but I'm glad that things are getting better. Congratulations and good luck with your decision.