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Nothing seems to be working for me, any advice.

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9 years 7 months ago - 9 years 6 months ago #54858 by Paula399
Hi Sandi, I have been on Nplate since October 2014, and have had serval crashes while being on it, I have tried almost everything prednisone, Imuran, dexmexasion 3days treatment, IVIG serval times, platelets transfusion, and nothing seems to be working, I been in and out of the hospital since I been sick, I am schedule to have my spleen taken out this month, and was hoping maybe you might have some advise. For I am sick and tired of taking all these medications that have very bad side effects. I am hoping having my spleen removed is going to help, I know this is not guarantee that I will get well but I don't know what else to do. ?

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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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9 years 7 months ago #54864 by Sandi
Can you list everything you've tried? How long have you been on N-Plate?

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9 years 7 months ago #54875 by Veronica
My husband has ITP and has had it since elementary school. He also has CVID. His platelets would only drop about every 4 years until he was about 24. Then they started dropping every year. He is now 29. He was on IVIG up until about 2 years ago, when his body started developing a sensitivity to it. His hemoglobin dropped to a 6 and he developed a high level of jaundice. The doctor put him on NPLATE and just over the last month his platelets have quit responding to it as well. The doctor told him those 2 treatments are the only ones he knows of to treat ITP. The doctor is sending him to Duke hospital to try and get some answers, if any. My husband also sees an infectious disease doctor for the CVID. That doctor said the only treatment for the CVID was IVIG once a month to try to boost his immune system, but they cannot give it to him because of his body's reaction. Over the last month, my husband's platelets have not been over 10k. They have also tried giving him bags of just platelets, but no response with that either. When we go to Duke I'll give an update. I really hope your platelets start responding to something soon. God bless.

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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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9 years 7 months ago #54876 by Sandi
Sorry to hear that, Veronica. I hope you get some help at Duke. How are his symptoms with low counts?

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