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Teardrop cells

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10 years 7 months ago #46948 by cheesenip77
Teardrop cells was created by cheesenip77
I have had ITP for over 20 years and now that I am 48 years old I am having a difficult time maintaining. My platelets recently dropped to 13k. I tasted blood in my mouth everyday. I have been on prednisone, tried Rituxan, tried WinRho and the only thing that works is NPlate but now I'm showing bone marrow distress and perhaps the beginning of myelofibrosis. Is anyone else experiencing this? I continue to get the NPlate every week it's the only way I have of getting my platelets above 30k. Please advise. I want a splenectomy but my hema says no no no.
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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10 years 7 months ago #47044 by karenr
Replied by karenr on topic Teardrop cells
Sorry you've had so much trouble with treatments. I assume the prednisone, Rituxan, and WinRho didn't work at all?

Why does your hema say no to splenectomy? Usually ITP folks in these discussion groups have doctors who WANT them to have splenectomies, and the patients don't want that surgery. Is your health otherwise good?

I had a splenectomy in 2004, and, although I've not had (so far) any of the problems that splenectomized patients sometimes have, the splenectomy didn't work. I was told my chances of remission were about 66%. Later I found out that age (I was 63) decreases those odds. I was also told that a good response to prednisone indicated that a splenectomy would more likely to successful. This was not so in my case. Also, I was never told that some patients do have a remission, but the remission doesn't last very long.

Just suggesting you get lots of info on splenectomies before you opt for one.
The following user(s) said Thank You: abbegirl
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10 years 7 months ago #47050 by Ann
Replied by Ann on topic Teardrop cells
If you are developing myelofibrosis you won't want a splenectomy. But if it were me with teardrop cells I'd stop the Nplate and check that it all goes back to normal.

Have you tried one of the immunosuppressants? Mycophenolate would be my choice.
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10 years 7 months ago #47055 by vaughanderek
Replied by vaughanderek on topic Teardrop cells
Mycophenolate works well for me with only slight side effects on the digestive system. It took about 4 months to work. I had no response to steroids and because of my age ( over 70 )I refused a splenectomy . Derek