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Need HELP!

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8 years 7 months ago #58144 by magnolia
Need HELP! was created by magnolia
Hello

Ok I'm scared to death and need some advice. I was diagnosed with ITP they said all my blood work looks fantastic except my platelet count. I've done platelet infusions, Rituxan infusions for 4 weeks, two rounds of IVIG and they are still going down. Now they want to do a bone marrow biopsy which I'm terrified now. Should I do the biopsy? ?
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8 years 7 months ago #58146 by Winnifred
Replied by Winnifred on topic Need HELP!
I had it done it helps to determine if your low platelet count is a production problem or destruction.
The following user(s) said Thank You: magnolia
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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8 years 7 months ago #58148 by mrsb04
Replied by mrsb04 on topic Need HELP!
I had one, it was fine, much less stressful than having a filling
The following user(s) said Thank You: magnolia
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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8 years 7 months ago #58152 by midwest6708
Replied by midwest6708 on topic Need HELP!
Are you terrified of the procedure or about what it will show?
The procedure itself shouldn't be anything to fear, if your doctor is adept at it. If you're more worried about what it might show, all you can do is wait and see. Even then, it probably won't show anything, which all but confirms ITP.

How long ago was your first Rituxan infusion? It can take up to 12 weeks to work, so it may be too soon to say it failed.
Platelet infusions never work to remediate ITP. They should only be used in life-threatening bleeding events.
IVIG only raises the count temporarily, at best. It's not considered a treatment that causes remissions.
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8 years 7 months ago #58153 by magnolia
Replied by magnolia on topic Need HELP!
Yes afraid of the unknown. I'm trying to stay positive since my b other blood work was great. I finished my last round of Rituxan January 30. Thank you for your help
  • 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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8 years 7 months ago #58159 by Sandi
Replied by Sandi on topic Need HELP!
Usually, a bone marrow biopsy isn't necessary to diagnose ITP, but it can help to rule out other causes of low platelets. I think we were all worried about what the results would be but most people ended up with good news. It sounds scarier than it is. Your lack of response to transfusions, IVIG and Rituxan do not indicate that there is a potential problem other than ITP. There i still time for Rituxan to work too.

The biopsy does not determine if the problem is production or destruction (sorry, Julia). That thinking used to be the case, but not any more.
The following user(s) said Thank You: magnolia
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 7 months ago #58169 by Hal9000
Replied by Hal9000 on topic Need HELP!
magnolia. You say your platelets just go down after treatment. Did your platelet count go up, but then over time go back down, when you took IVIG? Or, does IVIG not cause platelet counts to go up at all?
ITP Types and Treatments by HAL
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