hi everybody!! so a couple weeks ago I was in the hospital with platelets at 2,000. We got them up to 120,000 and steady for about 2 and a half weeks with prednisone. yesterday they were at 44,000, so I don't seem to be responding to steriods, and I got an ivig. Has this ever happened to anyone?? Does anyone know another treatment option if steriods don't work? thank you SO much
Idiopathic Thrombocytopenia Purpura (ITP)
IVIG is the initial treatment in case steroids won’t work. If your plt count still stays low, removing your spleen may be an option
I didn’t know that I had an accident with my spleen a long time ago
Woah, 2000?? I thought mine was bad at 50,000 and a hemoglobin of 5. Felt like I was dying. My numbers go up and down like my weight. I know exactly when I am low and what I am low on.i was going to ask my Dr. About steroid shot for my WBC's. I didn't know they use them for platelets.
Hi I have had chronic ITP for 19 years. My platelets have also been as low as 2,000 before. I was on steroids for a long time and it helped but then it got really bad again. I was sitting at 20,000 platelets 3 years ago. They had me go through an IV treatment called Rituxan or Rituximab. I sat in the IV chair for 4 hours once a week for a month. My platelets have remained high 100,000s ever since. That IV treatment is typically used for cancer patients but my hematologist decided to try it for me. It has been the best thing that has helped me.
hello thanks for responding!! I got rituxan and tapered off the steriods while getting it. At first my hematologist thought it didn't work but... my platelets seem to be high now like 166,000 for weeks and that's exciting. Do you know if it is possible it was just delayed? Or if yours worked immediately? Thanks ❤️
I had my first instance of ITP at the beginning of 2020. Responded mildly to prednisone treatment but platelets dropped once I was off. I then did a similar 4 doses of Rituxan and I haven’t had issues since!
that’s good to know. My Hematologist recommended Rituxan but I declined. Thank God today I’m stable. I spent 9 days in the hospital for platelets at 5,000
So you just deal . I haven’t even had this for a year and I’m losing it. Nothing keeps them up. I get IVIG and that helps for a little bit but I get blood clots in my lungs so I have to be on blood thinners. It’s driving me crazy.
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