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Adults With ITP
Newly Diagnosed & Frequently Asked Questions
Excellent Advice for newly diagnosed

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Excellent Advice for newly diagnosed 1 year 2 weeks ago #69920

  • JMRN7643
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Thanks for posting. This is both helpful and comforting. I was diagnosed 2 weeks ago, with a count of less than 7.
Hind sight is always 20/20, right? Well, I've been feeling lousy for months....and being a registered nurse, I've been working a lot. Thanks to COVID, there has been no shortage of overtime hours available. I had been having horrible headaches and petechiae on my face and around my mouth, which I just considered a result of wearing a tight fitting mask for the majority of my day and I excused my exhaustion on all the extra hours......until I took a week of vacation and did not feel any better. It was then that I started bruising excessively and so I the nurse in me thought I should probably get that checked out....Now here I am, newly diagnosed and starting my treatment journey. I appreciate the words of wisdom and this group! Thank you!!

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Excellent Advice for newly diagnosed 1 year 1 week ago #69985

  • sleev-les
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You're a couple weeks behind me. The 17th is a month since I was admitted to the ER to figure out what was wrong. So I'm a month in . Still on the primary treatment of Prednisone and weekly blood work. Petachea started for me after the prednisone started though which is odd, but hey, everything about this is odd and no one is the same in this journey. My symptoms were excessive bleeding (diabetic so insulin injections) and bruising around my stomach. Crazy that it just happens, but I am happy I found this site and some of the Facebook groups. Has been great to talk and hear others experiences.

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Excellent Advice for newly diagnosed 9 months 1 week ago #70453

  • 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?

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Excellent Advice for newly diagnosed 9 months 1 week ago #70467

  • EdwardJacob
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I know this is scary. My platelets are killed by my immune system. It is called autoimmune thrombocytopenia. Prednisone increases the numbers when they are low. Is yours autoimmune? Do they know the cause yet. I wish you well. You are not alone with this. There are many of us.

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Excellent Advice for newly diagnosed 9 months 1 week ago #70468

  • MelA
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Hi Zach - you are from a beautiful State. You are probably in Colorado now?
Do you mean platelet of 5 or 5k, 6 or 6k?

Are you on Rituxan, Nplate and cyclosporine right now? Rituxan and take a long time to work if it is going to. IVIg is not long lasting. And since I've only had prednisone & WinRho I know nothing about the other.

Know this has your mind in a twist and I hope that your platelets will increase soon and stay at a good level. There is life with ITP - I've had it since 1989, and moved overseas with it.

Keep us posted!

PS - you probably would get more responses if you start a new thread in the Newly Diagnoses section as more people will see it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Excellent Advice for newly diagnosed 9 months 1 week ago #70469

  • Zach Tarver
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By 5 I meant 5K, Today i was at a 0 with just slight gum bleeding and was provided a platelet transfusion that bumped me up to 2k. Trying to stay positive! and I am from Wyoming, currently admitted in Montana. I currently have gone through 4 treatments of rituxan since December 16th, I started cyclosporine a week ago, and have been getting Nplate injections once a week. Currently being tapered off prednisone as they dont seem to be doing anything. Thank you all
The following user(s) said Thank You: MelA

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Excellent Advice for newly diagnosed 9 months 6 days ago #70514

  • Columbia09
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It could be a long fight against ITP. Thanks PDSA for us to hang around sharing information and get inspired from each other. Personally, I became very
sensitive on my diet. Many food go against platelet, such as spicy, onion, tomato, milk, bee products. The one I found is helpful with platelet generation is guava fruit. The other thing to pay attention is if you have other immune issues, such as thyroid, psoriasis, which might have some inter-connected effects.

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Excellent Advice for newly diagnosed 9 months 5 days ago #70516

  • gozorakgogo
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what parts of Wyoming are you from? I was stationed at F.E. Warren AFB in Cheyenne a long long time ago in a decade far far away(1987-1991) I loved it there

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Excellent Advice for newly diagnosed 9 months 5 days ago #70519

  • Zach Tarver
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I have altered my diet too, cutting anything with sugars or dairy for now, platelets went up to 4 today which is better than a 0. I am from northern Wyoming, the Big Horn Basin. My dad lives just south of Cheyenne, I love Wyoming as well.

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Excellent Advice for newly diagnosed 3 months 2 weeks ago #71624

  • justme
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Thank you. This is so helpful.

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Excellent Advice for newly diagnosed 3 months 2 weeks ago #71647

  • Zach Tarver
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Been a long time since I’ve updated, I got out of the hospital after 2 months with platelets at 0 basically. 2 weeks out of the hospital and my numbers went up to 300,000. I’ve been in that range for the last 6 month now! Get weekly Nplate dose of 1 and I’m almost off cyclosporine

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Excellent Advice for newly diagnosed

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