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Breakthrough??

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13 years 10 months ago #20443 by charlottem005
Breakthrough?? was created by charlottem005
I was originally diagnosed with ITP back in 2008. I had a months worth of Prednisone treatment from start to weaning and my count remained stable for a couple months so I decided to try for a baby. My doctor was confident I had an acute ITP situation and I would be fine. My pregnancy went very well, and my son was born with no platelet issues. About 6 weeks after having him, I had a horrible bleeding incident which still is unsure whether it was menstrual or something else, but after that my platelets dropped and I would be treated with Prednisone, then they would drop again after a month. I basically was on Prednisone every other month since January 2010. My doctor finally was ready to try a different treatment (Rituxan) upon a co-pay assistance approval this year as of October. Well, luckily my count wasn't drastically low because I still have not had any word from the co-pay assistance program . Well, I would be very concerned given my track record of ITP for the past 2 years, but something magically happened several weeks ago. My count last was at 98k which in ITP land is pretty awesome. Then a couple weeks after they ROSE to 125k. This has not happened on its own since my initial diagnosis in 2008. Then last week they ROSE again to 225k. Let me re-iterate that this is with no treatment. I am curious if this has happened with anyone else? Am I perhaps in a remission or should I not get too excited?
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13 years 9 months ago #20473 by Mark
Replied by Mark on topic Re: Breakthrough??
Congratulations on your good counts!

The paper "The epidemiology of immune thrombocytopenic purpura"
Fogarty and Segal (2007) Current Opinion in Hematology 2007, 14:515–519 states that

"Spontaneous remission rates vary by report and range from 5 to 11%." So, sure, you could be in that subset.
I hope your values persist...

Mark
  • 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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13 years 9 months ago #20490 by Sandi
Replied by Sandi on topic Re: Breakthrough??
Charlotte:

Look at it this way, any rise without treatment is exciting so yes, be excited! If it doesn't last, go back to your plan but in the meantime, enjoy!

You never know what is going to happen with ITP. Saying "never" or "always" are not good descriptive words.