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Post second splenectomy (grew 3 accessory) still low counts

  • mspach223
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  • At 13 on prednisone 1-1/2 years before splenectomy at 14. Remission for 40 years. ITP returned four years ago, platelets monitored. 6/17 platelets up and down and went down below 20k so first prednisone, then IVIG, Rituxan and now splenectomy again
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7 years 11 months ago #63535 by mspach223
At 13 I was on prednisone 1-1/2 years before splenectomy at 14. Remission for 40 years. ITP returned four years ago, platelets monitored and they were up and down like a yo-yo. Also, a CT scan revealed I had three accessory spleens which grew back. In. 6/17 my platelets were up and down and went down below 20k so at first prednisone was started burst and taper but after six months it was decided that was a failed therapy. So next treatment was four treatments of Rituxan..I had no side effects and platelets were barely affected..so I had to have a few IVIG infusions in order to raise the platelet count. So after Rituxan two months later, I had my three splenules removed (that was 3/26/18). It was to be expected the first few counts would be high, which they were up to 600k but by the third week post splenectomies platelets were down to 90k for two weeks straight and then 170k and 180k the next weeks...so I was very optimistic. I decided to give my veins a rest and didn't have a blood draw for one week. I had a platelet count drawn for a hematology appointment today and to my astonishment it was only 49k. So the hematologist had me do a repeat to see if I had clumping. There was no clumping and the repeat platelet count today was 49k again! Has anyone else had return symptoms after all these treatment modalities? I guess we are at a watch and see part of this game again, and I don't know what the next step will be. .needing a little reassurance. Thanks for any input!!!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 11 months ago #63537 by Sandi
It's not unusual for splenectomies to fail and to not have a good response to those treatments. You might want to look into Promacta or N-Plate. Both of those have a risk of clotting though and the risk may be even higher since you've had a splenectomy. They are an option though if you should need to treat.

Your counts are still above treatment level, so hopefully they stay there.
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