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TOPIC: New to ITP

New to ITP 1 year 8 months ago #60152

  • Lhurst
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Hello my name is Laura I am 25 years old and I was diagnosed with ITP in May of this year. It all started when my primary ran blood test after I wasn't feeling right coming back with a platelet count of 10,000. She sent me to the hospital where they kept me for three days with my count dropping to 2,000. After many test to rule everything out they diagnosed me with ITP. They gave me IVIG and steroids. Which helped getting my platelets up to 156,000. After being discharged I was given Prednisone 60 mg. My counts were good on the steroids any where between 300,000 and 200,000. My hematologist slowly tapered me off of it over the next couple months. I have been off of the steroid for two weeks now. I went to my hematologist/oncologist yesterday and my platelets are at 260,000. Which is great. But my hematologist has now graduated and released me from his treatment. He told me if I have any other issues to go to my primary. He has assured me this was only a one time thing and my ITP will not return. I tired to talk with him and he just dismissed any questions or concerns I had as he always did. Is this normal for him to release me as a patient already? This is all new to me but I want to make sure I'm getting the best treatment. I am a mother of two so I don't want to take any chances. I just want to know if I'm just being to worried or if I need to find a new hematologist.

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New to ITP 1 year 8 months ago #60154

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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From my time around here, seriously, you should be good to go. Plus, your ITP radar seem's well in tune. Was it a tired feeling or ?

Curious. Do you have any food allergies, hay fever, a lot of congestion at times, or something like that? Any clues about what brought the ITP on?

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New to ITP 1 year 8 months ago #60155

  • Lhurst
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They think my ITP was brought on by the flu. I tested positive for the flu about a month before I started to notice symptoms. It started with petechia all over my legs. Which at first the doctors confused with an allergic reaction. After that I noticed I was very fatigued. Could hardly stay awake after 6:30 pm every night. Followed by very heavy menstrual cycles. Then I started to notice the bruising. I work in the medical field and the nurse practitioner I work with thought it could autoimmune so she told me to go to the primary.

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New to ITP 1 year 8 months ago #60156

  • 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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The answer to this problem is simple, really. Follow up with your GP, have regular counts done (like once a month unless you get symptoms). If your counts drop, you'll go right back to the Hemo. Being released doesn't mean much. He will still have to help you if counts drop again but in the meantime, you just need monitored and a GP can do that.

Some people do have acute ITP so it's possible that it might not recur. If it does, we're all here.

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