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Question on IIP 2 months 1 day ago #71078

  • Painter13
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  • Posts: 6
  • Thank you received: 1
I was wondering how low does my platelets have to go before spots begin to appear? Just had a bout and the signs were coming on my feet and legs, but no bleeding from nose or mouth. Just I start panicking! The numbers might be different I realize for different folks. Is below 10,000 or 30,000 show signs? First time I got it my platelet count went 2,000 scary stuff which happened after taking a flu shot and pneumonia shot last November! Now platelets hover at around 40,000 after treatment, with steroids, but I usually have to take Prednisone for five to six days to get rid of spots! I got ITP in November 2020 and had to receive IVIG treatment in hospital after three months my spots would come back and I took steroids for a few days to stop the spots! It works for about 3 to 4 weeks! Just wondering? Of course, I am going to get my blood test and the Doctor will call me, I no my numbers will be up after taking steroids! So basically I don’t know how low they really went! Trying to keep my numbers up with diet too! Just learning and it is truly scary! Thx

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Question on IIP 2 months 1 day ago #71081

  • momto3boys
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Because everyone is so different in terms of symptoms, there is really no answer to your question. There are people who can live just fine with counts around 20,000 and then there are people who have bleeding even when they have higher counts. I know it can feel scary in the beginning, but over time you will learn to look at your symptoms and know when you might require more treatment based on what your bruising or "spots" look like.

It looks like you have only been diagnosed with ITP for a few months, so I'm sure everything is still feeling overwhelming. Do you have a hematologist? In looking at your description, it sounds like they have only tried steroids and IVIG on you so far? There are so many treatments for ITP that are available today that can help you manage ITP without requiring you to be hospitalized for IVIG infusions or dealing with the horrible side effects of steroids. Some of the drugs that people are using for ITP nowadays are Promacta, NPlate, Tavalisse, Doptelet, Rituxan, and many more! If your doctor is just trying to manage your platelet counts by giving you IVIG or steroids and is not suggesting other treatments, you might want to talk with them about why they aren't trying other treatments. If your doctor does not have a lot of experience with treating ITP with modern treatments, you might want to shop around for a new hematologist.

Many of these treatments can control counts very well for most people and will keep you out of the doctor's office and out of the hospital! Reading about ITP is also very helpful in the beginning, so you've taken a big step in trying to learn more about the condition here, which is great. Feel free to ask any questions that you may have and don't be afraid to ask your doctor questions if you don't feel like your treatments are working for you. There are many doctors who don't know a lot about ITP, so keep that in mind. Best of luck!
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