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Excellent Advice for newly diagnosed 1 year 10 months 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 9 months 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 1 year 6 months 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 1 year 6 months 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 1 year 6 months 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 1 year 6 months 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
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Excellent Advice for newly diagnosed 1 year 6 months 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 1 year 6 months 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 1 year 6 months 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 1 year 1 month ago #71624

  • justme
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Thank you. This is so helpful.

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Excellent Advice for newly diagnosed 1 year 1 month 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 1 month 6 days ago #72455

  • malizgue
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Hello, 
im having issues with my mother newly diagnosed not fond of meds, is there something natural or supplements that help out. My mothers doc hasnt give her anything at all, just said if she bleeds profusely to take her to emergency asap and tell them what she has..that's all.
we are currently looking for a doc that takes her insurance at this moment, that would be our dr number 6..yes the others just dont do anything at all which is worrying for us.
sorry if it is quite off topic, we are kind of lost

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Excellent Advice for newly diagnosed 1 month 3 days ago #72469

  • MelA
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malizgue what is your Mother's platelet count?
"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 1 month 2 days ago #72474

  • malizgue
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98. Her dr just said if she bleeds too much to to emergency room, to wait until body collapse then they can see what's wrong with her.
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Excellent Advice for newly diagnosed 1 month 2 days ago #72477

  • 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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Malizque
A count of 98 does not require treatment.  A watch and wait approach is the correct way to go. This is in line with the international ITP guidelines. Follow the link below 
  www.pdsa.org/images/InternationalConsensusReport2019.pdf

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Excellent Advice for newly diagnosed 1 month 2 days ago #72478

  • MelA
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malizgue a count of 98 is a good count really!  Treating at that count would never be done by my hematologist!
However if I had a hematologist (I'm assuming your Mother's doctor is a hematologist) tell me to just go to the emergency room if I'm bleeding too much & to wait for body collapse I'd find another hematologist fast!  That's ridiculous!

Are you near Houston, aren't there really good hospitals there?  (I'm talking about a 2nd opinion not to take her to the ER if she's bleeding a lot)  
"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 1 month 18 hours ago #72482

  • malizgue
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Her blood count went to 65 no apparent reason. She was told a year ago she was a point from hitting leukemia, tbats how grandpa die and didnt find it until he died.
She lives in Houston. She will have a dr appt with a Dr next week (Dr #8) for whatever reason she's referred always to oncogist instead of hematology. The many Dr she had so far, only do the same blood test but dont do anything or say anything at all, no recommendations, diet, supplements, advice  at all. She's tired all time, she's sleeps a.lot, don't feel hungry buy force herself to eat. There are many times I believe she won't make it. She's losing faith. Is like when you turn off a fan that's stopping and shut down slowly.
That's why I make take her to a Dr  I heard a lot, hes close and across to the border a friend days he's an specialist in kidney  and liver and he cured a friend who's been suffering with anemia almost leukemia. My friend says he prescribed traditional meds along with natural  medicine and supplements.

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Excellent Advice for newly diagnosed 1 month 3 hours ago #72485

  • MelA
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A hematologist is an oncologist too.  I just saw mine yesterday, the exam room was a hop skip & a jump from the infusion room - he specializes in blood cancers, GI cancer, and blood disorders [ex: ITP].    
"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 4 weeks 2 days ago #72487

  • JJ
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There's nothing to do unless the platelet count goes much lower. Changing doctors won't help as none of them will treat. There are no supplements or diet that will help. You and she are worrying unnecessarily. 
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Excellent Advice for newly diagnosed 3 weeks 6 days ago #72495

  • EdwardJacob
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They thought I had ITP for several years. My platelets kept on a slow slide down. No treatment was needed, I was told, until they got lower. A number of treatments were finally tried. I too was tired all the time. Finally, I had a bone marrow biopsy. It sounds terrible, but is no big deal. The use lidocaine. It doesn't hurt. There is a dull ache which goes away in a few days. It showed blasts in my bone marry. I have Leukemia. I am 76. I am now going through chemotherapy. While there are risks at this age, I am fortunate that I have Medicare and a good supplemental plan. While the treatment and the disease are dangerous stuff, I wish I got the bone marrow biopsy 10 tears ago. I hope I survive the treatment and have a few more years. 

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