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How rare is rare? 1 of 4 people in my workplace with ITP

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
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7 years 7 months ago #62764 by Antsonparade
How rare is rare? 1 of 4 people in my workplace with ITP was created by Antsonparade
I am from a fairly small community and work for the school district...in the only elementary in the town. One of our district students was diagnosed with ITP 2 years ago, I was diagnosed with ITP in May 2017, my neighbor (and retired employee of the same school I work in) was diagnosed with ITP in July or August of 2017, and now another secretary from our district was just diagnosed with ITP last week (February 2018). I have been told it is fairly rare but I find it odd that there are 4 known cases connected with the building I work in...has anyone else noticed anything like this?
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin
  • 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 7 months ago #62767 by Sandi
Replied by Sandi on topic How rare is rare? 1 of 4 people in my workplace with ITP
I keep hearing that it's rare too but I've also known people who have had it, including my sister. I think it's becoming more common due to the increase in vaccines (listed side effect) and the increase in antibiotic use (listed side effect).
The following user(s) said Thank You: Antsonparade
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 7 months ago #62769 by Hal9000
Replied by Hal9000 on topic How rare is rare? 1 of 4 people in my workplace with ITP
ITP is pretty rare for sure. What is it, something like 1 in 100,000 have it?

About your 461 high count with IVIG treatment. That's a pretty high number. Tell me, how well do you respond to steroids? Are you on Promacta/Nplate?
ITP Types and Treatments by HAL
  • 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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7 years 7 months ago #62770 by mrsb04
Replied by mrsb04 on topic How rare is rare? 1 of 4 people in my workplace with ITP
27,000 population of my town. To the best of my knowledge there are 2 ITP patients.
  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
More
7 years 7 months ago - 7 years 7 months ago #62771 by Antsonparade
Replied by Antsonparade on topic How rare is rare? 1 of 4 people in my workplace with ITP
I was at 461 for about a week and fell quickly. I dropped to 23 in about 4 months and went through 4 Rituxan treatments in August and September and now I am bouncing between 50 and 95...
I don't respond very well to steriods. I peaked at about 140 and the fell quickly as i was still taking them.
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin
  • Antsonparade
  • Topic Author
  • Offline
  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
More
7 years 7 months ago #62772 by Antsonparade
Replied by Antsonparade on topic How rare is rare? 1 of 4 people in my workplace with ITP
We have a population of roughly 2,000 in our town and have 4...more concerning, we are all connected by our work place (or school building)
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin
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