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7 years 3 months ago #63703 by Laufromfrance
Some news was created by Laufromfrance
I did not give news in the last weeks because It was rather hard time for us. Writing in english is hard for me and writing not really good news harder...so here is the situation for my daughter. Nplate did not work. We have been using it for five weeks, increasing the doses and keeping prednisone: always low counts, about 15000. My daughter had her scholl exams. Then she had some days in hospital: platelets 7000. The doctor wanted to check a lot of things and she had ivig and a higher shot of Nplate. Just after Ivig she was 80000 and could go home. It was last saturday. But yesterday she was 16000 again. She had vaccines because of Rituxan coming soon. The hematologist will give her an appointment for a BMB next week. Except platlets everything is ok but she wants to check everything before Rtx. BMB was done when itp was diagnosed in january 2016.
So here we are. Promacta stopped working, Nplate did not really work, prednisone 40mg daily waiting for Rtx...
We had hard times in the last weeks to tell the truth. But we keep smiling to itp American friends!
  • 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 3 months ago #63704 by Sandi
Replied by Sandi on topic Some news
I'm sorry to hear the news. Sometimes N-Plate takes longer than five weeks to work though.
I have never heard of giving vaccines prior to Rituxan.
Keep us updated!
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7 years 3 months ago #63705 by Laufromfrance
Replied by Laufromfrance on topic Some news
Always here Sandi! So nice for everybody. Vaccines which were given are the same which are given before splenectomy. I think the hematologist is thinking about that perhaps for the future and wants them to be done... a scan of the spleen was done, everything was fine.
I wonder if these vaccines are the protocol to follow here.
I read some articles in French and I update about that.
For Nplate it looked for me as if , in a weird way, each shot worsened the counts....which is not possible. So...hard to understand what is happening.
  • 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 3 months ago #63706 by Sandi
Replied by Sandi on topic Some news
The studies that I've read state that Rituxan pretty much wipes out immunity from vaccines. I hope she doesn't move on to splenectomy so soon after Rituxan! I know this is frustrating, but slow and steady wins the race.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 3 months ago #63707 by dru
Replied by dru on topic Some news
So sorry to hear of this. It must have been so hard for your daughter to get through exams. She is fortunate to have your support to help her get through this. Hope you both can keep your spirits up.