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newbie 11 months 4 weeks ago #63557

  • NK18
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Hi...
I have been researching ITP and read a lot about it here. Thank you all for posting your questions, stories and sharing your experience. It has been VERY helpful for me:))

I am 38 and a bit lost here. I don' t know anyone with ITP and have nobody to talk about it. My husband understands and is worried, but cannot answer my questions:) I have been diagnosed 2 weeks ago. At the beginning of April my count was 82, but because of miscommunication I got my second draw at the beginning of May on Friday, May 11. It was 44. On Monday it dropped to 40. I had ultrasound- spleen and liver are fine. All other blood work is fine (except i am a bit anemic). Then I had another blood draw on Thursday, it was 39. I saw hematologist on Friday, May 17. She said, to see her in 4 weeks. A week goes by and I am freaking out here. For me it looks like that the platelet count is dropping. My hematologist said that count varies and 5 counts is not a much variation for one week; that I should be fine and will need a treatment only if it is below 30. Also she said to go to ER immediately if I have unusual bruising.

So here I come.... Why would not she ask me to do another draw 2 week later? Why wait for a month when it is evident that the counts are dropping? I am a new patient and maybe my platelets are dropping as I am writing it. :) I think I am wrong thinking that way, but that thought does not leave me. I go to bed with it, weak up with it, go through the day with it. It drives me nuts...:) On June 5th I need to fly to LA for two days ( I live in SF), so it is a short flight. The Dr. said to check ER locations in LA just in case, but I should be fine. I want to ask my hematologist to have another blood draw before the flight. It would be almost 3 weeks after my last blood draw. Why should I risk it? Am I wrong thinking it? Am I exaggerating? To add to my worries, I have two kids, who I don't want to bother with my ITP. They have been though a lot last year with Celiac diagnosis and to worry about me now, would be too much. My husband is worried as well, so I am putting my brave mask on saying that it is not dangerous and I will be fine. That 39 is fine. Meanwhile, I am panicking inside.... Please ITP gurus, help me out:))

Nina
P.S. I guess reading stories about dying from ITP or treatments that do not work, does not help me to think straight either :)

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newbie 11 months 4 weeks ago #63558

  • 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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NK:

It is very, very rare to die from ITP. There is a thread here about a young man who died but he did not die from ITP.

I know you are new to ITP but symptoms mean more than the actual count does. Bleeding would be the worst symptom, of course. Have you had any abnormal bruising or nose bleeds? Your counts are still above treatment range. I know it seems scary and frustrating to not have more frequent counts done, but it's good that your doctor is not one to panic and overreact. That can be worse than a doctor who is more relaxed. Your Hematologist is right that 39k and 44k are basically the same. Counts can fluctuate that much in an hour.

If you're really worried, see if your GP will give you a script for a CBC before you leave for your trip.

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newbie 11 months 4 weeks ago #63560

  • NK18
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Thank you Sandi. I am not worried about the death. I am just worried that i don't know so much and I might miss something. I do not have any unusual bleeding or bruises. Do you think if I note some bruising in LA, I will be bale to travel quickly back? Can the flight affect my bruising?

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newbie 11 months 4 weeks ago #63562

  • mrsb04
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Nina
It's all very scary to start with but do not panic. It's all about treating the symptoms not the count. If you don't have symptoms then you don't really need meds. The more counts you have the more you will worry if they drop. If I could be treatment free with a count above 25 I'd go for that any day. Unfortunately I can't as become too symptomatic at anything under 20.

There is no evidence to support flying being contraindicated when one has ITP. My haemo told me any count above zero is fine to fly with.

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newbie 11 months 4 weeks ago #63564

  • 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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NK bruising itself isn't cause to worry. It depends on the bruises. A few small, yellow ones aren't anything to worry about. If you see some large, black ones that you can't account for, that's a bit more concerning, but no reason to panic. I don't think you'll miss anything. ITP symptoms have a way of making themselves known.

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newbie 11 months 4 weeks ago #63566

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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NK
I echo what other people have said. If your counts go too low you cant miss the symptoms- blood blisters, large areas of petechia, bruises all over your body. You are fortunate to have a hematologist who is just monitoring you but not jumping in to treat levels over 30.
I have traveled with very low counts with no problem. I know the worry you are having can be very stressful.

Dru

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newbie 11 months 4 weeks ago #63567

  • NK18
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Thank you very much! I did not know that. I thought that one has a treatment and symptoms if count is below 30. Whew! So I will have time to get back to SF as well in case of developing symptoms. Yes, I think I am scared because don't know much. :(

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newbie 11 months 4 weeks ago #63568

  • NK18
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Thank you Sandi! I am easily bruised, but so far no dark ones! I have some red "freckles" on my arms, but highly doubt it is petechia. :)

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newbie 11 months 4 weeks ago #63569

  • NK18
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Thank you Dru. I need to get used to my new reality and stop worrying that my count is below normal. I am glad that my hematologist is good:) She told me she has many patients with ITP, but I was skeptical because she did not ask for the blood draw to be done sooner. With all the answers it makes sense. Will see how it goes in June! (part of me still hopes that my counts will go back to normal:))) ). I guess, I have not accepted my diagnoses fully.

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newbie 11 months 4 weeks ago #63575

  • 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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Everyone is different with counts and symptoms. I was usually good until I hit 15k. Some never have symptoms and some have them at higher counts.

It is always possible that your counts could go back to normal. Remissions can happen at any time. Sometimes counts drop temporarily (or permanently) after an illness, medication or vaccine. If you do need to treat, there are several options and you will get through it.

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newbie 11 months 3 weeks ago #63579

  • NK18
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Thank you Sandi. You are such a big help. I am so happy i found this forum to ask my questions and hopefully will be able to share my experience with someone who needs it.

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