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First month with ITP 3 months 1 day ago #70454

  • Zach Tarver
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Hello my name is zach tarver, I am 25 years old and was diagnosed with ITP a month ago and in the hospital ever since because my local hospital transferred me to a different hospital out of state because our local one doesn't have a blood bank. I was admitted with platelets at 5, had purpura and petechea, bleeding gums. Dexa and IVIG were givin to me, my platelets shot up to 125k and crashed to 6 within a week. The same procedure was done and the same response was had. They started Retuxan and Nplate injections about 3 weeks ago with no response so far, I also started cyclosporine a week ago. My numbers are fluctuating between 0-3 for the last week. Petechiae and purpura are basically non existent, and no bleeding for a week. Anybody else out there? Thank you

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First month with ITP 3 months 1 day ago #70455

  • gozorakgogo
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Hello friend. I was in the same boat this past July. Admitted into the Hospital with a level of 2 for 6 days. IVIG brought me up to 45 and I was released. By the following week I was back down to 3 and readmitted into the hospital when I began 4 weekly Ritux infusions along with Nplate. It took around 3 weeks for my platelet levels to stabilize in the "normal" range. I then maintained platelet levels well over 200 for 2 solid months with weekly Nplate.

The decision to stop weekly Nplate was made the second week of November with my level at 300. I went back last monday after 2 months of not having levels checked or Nplate and my level was down to 93. Still acceptable but if it continues to trend downward I am assuming back on Nplate. I would give it a couple of weeks and I bet you will see improvements. Its really frustrating and worrisome at first when your in the hospital with such low levels and you worry about and have anxiety about whether that next blood test will show improvement or decline in your platelet levels. YOu will probably see a bit of both before there is a leveling out. Stay positive. Its not as bad as it at first seems
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First month with ITP 3 months 1 day ago #70457

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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IVIg will produce a transient response. Did you have Dex pulses? Rituximab can take 3 months to work. Has your N plate dose been increased to the maximum dose?
Suppressing your immune system with cyclophosphamide on top on Ritux is risky during a Covid pandemic.
Are you being treated by haematologist?
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First month with ITP 3 months 1 day ago #70462

  • Zach Tarver
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Thank you for the reply, Yes i am being treated by a hematologist. Tapering off prednisone as they don't seem to be working as well.

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First month with ITP 3 months 16 hours ago #70464

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1812
  • Karma: 7
  • Thank you received: 516
I don't think you mentioned pred. in your first post. Question everything your haemo tells you. Ask for the evidence base this will indicate if his/her knowledge is up to date.

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First month with ITP 3 months 9 hours ago #70465

  • Zach Tarver
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Been on prednisone for about a month, tapering off now as the hematologist doesn't believe they are doing anything. My Nplate was increased to 10 last friday, although the numbers don't seem to want to budge my symptoms have decreased to almost nothing. I started Rituxan December 16th to be more clear. Just ready to head home, hard to be away from my wife and two kids. The hematologist has reached out to mayo clinic and we are waiting for a response.

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First month with ITP 2 months 4 weeks ago #70470

  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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Don’t let it get you too discouraged. It’s such an odd disorder. First time I had it the prednisone worked right away but when it came back it didn’t work. Had to go through a few other treatments to find something that worked. You got this.
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