Hi there,
I thought I'd post about my ITP experience if it might help someone else in some way. Some folks on the forum know me a little and many (Sandi, Michel, Gort, Ann, Joan, others!) helped me a lot through the scary and rough times after diagnosis. That was so extremely helpful. I was diagnosed in March 2009. My baby was 8 months old. The next 11 months were really up and down. Platelets would go below 10, I'd get IVIg or do a decadron 4-day pulse and they'd go up for about 2 weeks, then bottom out again. I also did a pred taper in there which worked well until I was off.
I kept holding out for things to get better and then they did, which felt totally unreal! In November, it seemed they would hang around 20-30 instead of going to 10. I did another pred taper because of a super long nosebleed and then my platelets starting going up on their own. I was absolutely thrilled. This was 1 year after I was diagnosed. A few months later I became pregnant, which is something I really wanted and had worried that we wouldn't get to do.
Now I'm 20 weeks along, platelets are great (around 140). They will look at the baby's heart every few weeks now because I have anti Ro (SSA) antibodies which in 1-3% of cases can cause heart block in the fetus. These antibodies are associated with autoimmune disorders - some people have them and most don't.
I'm hopeful everything will go well. I realise ITP can come back at any time but I hope it never does of course. Long story short, I really wanted others to know that remission does happen.
