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TOPIC: Im really confused please help?

Im really confused please help? 2 months 3 weeks ago #67134

  • Ntkl79
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Hi Everyone, My sister had a blood test on wednesday and friday she was told she had plalete count of 15 and it should not be under 150 apparently. They have started her on tablet treatment but not steroids. She does bruise but mildly and has never had any bleeding. Apart from feeling tired sometimes she feels fine. The doctors said it could have been an underlying issue like a viral infection that triggered but they are not sure. They said that it sounds like she has ITP. We have never heard of this before so do not know much about it apart from what we have been reading online. She is 23 years old and doesnt smoke or drink. We do not know what to expect in the future.
Any information would be highly appreciated xx
Thank you in advance

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Im really confused please help? 2 months 3 weeks ago #67142

  • MelA
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Weekends are usually pretty quiet around here - you should hear from people soon.

In the meantime - 150,000 is usually the lower end of the range for most labs. I was diagnosed in 1989 at 11,000 and dropping. Like your sister I had no symptoms other than bruising, looked like I had been beaten up in a back alley with a 2x4. The majority do not know what triggered their ITP. Has the medication your sister was given helped increase her platelet count? Do you know what that medication is?

I see you are in the UK - hopefully one of the members from there will see your post and respond.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Im really confused please help? 2 months 3 weeks ago #67143

  • mrsb04
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What tablet has your sister been started on?

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Im really confused please help? 2 months 3 weeks ago #67144

  • Ntkl79
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Thank you for your reply. Its been a very scary few days. She is on eltrombopag 50mg and something else to help the blod clot which she takes 3 times a day.
She is so scared and keeps thinking shes going to all of sudden bleed in the brain and die. Shes reading all the negative things on the internet. We have another appointment tomorrow to see if her platelet count has gone doen even more.

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Im really confused please help? 2 months 3 weeks ago #67145

  • Ntkl79
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eltrombopag 50mg and something for blod clotting three times a day.

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Im really confused please help? 2 months 3 weeks ago #67146

  • Ntkl79
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She has only been on the medication simce friday so I suppose its too early to tell

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Im really confused please help? 2 months 3 weeks ago #67148

  • MelA
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1st tell your sister to quit searching and reading junk off the internet - she should be here along with you [by the way you are a great sibling!]. The secret is to read only the legit info - knowledge is power - and to remember is is your body.

At the top of this page just above the bit about the ITP Conference are 7 tabs:
Home Mission Patient+Caregivers Healthcare Professionals+Researchers and 2 more
She should read what is under those headings.

Not sure why they are giving her something to help clotting - one can have a stroke even with a low platelet count.

Tell her I was diagnosed in 1989 with a count of 11,000 and dropping - shortly after we moved to Tokyo then Hong Kong, did a lot of traveling while overseas. My count has been high, has been low - I'm still living and enjoying life. Tell her not to be negative - of course she [and you] are worried & concerned & scared, we all were - but can't just roll over and give up.

Oh and tell her I fell January 16, 2018 when I missed a curb, my head hit a rock & concrete planter thing and the pain in my left shoulder was way way way beyond belief!! Got a ride in an ambulance to the hospital where a CT showed no brain bleed & 3 staples were inserted to close the head wound, the ball of my shoulder was in little pieces but still together so no surgery on it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Im really confused please help? 2 months 3 weeks ago #67149

  • Ntkl79
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Thank you so much for this.. your reply came at a perfect time. Me and the sis were having a heart to heart about how she really feels about all of this and then cane your reply. I read it out to her and I could see instantly it made a difference. We got a list of questions ready for the appointment tomorrow.
And I also said that maybe she can join here as it may be easier for to understand by reading real experiences and asking any questions she may have.
Thank you again xx
The following user(s) said Thank You: MelA

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Im really confused please help? 2 months 3 weeks ago #67152

  • MelA
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As I said - you are a great sibling!
Very good idea to get all questions written down - I do that too, I type it up & then print out 2 copies so I have one and my hematologist has one. Do you go with her as her 2nd set of ears? I see my hematologist tomorrow too - I have a new on as of January and really do like him.

This is a shock of course - I was older & had a husband & 2 kids when diagnosed, your sister is young. I hope she likes her doctor and feels comfortable
with any decisions she makes. I might add that usually the goal is to get platelets at a good number not necessarily in the normal range. Since 1989 I've been anywhere from below 11,000 to 401,000 [or was that 402,000.

Let us know how her appointment goes tomorrow - and we hope to see her, as well as you, here sometime!

PS - another thing that isn't a bad idea to do is keep track of the platelet count - I used to do that when 1st diagnosed, my husband made a chart for me with the date/platelet count/amount of prednisone I was on. Way back then the treatment was prednisone or splenectomy, I elected to keep my spleen since it was just doing its job plus I couldn't be promised removal would be a cure so I was on prednisone.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Im really confused please help? 2 months 3 weeks ago #67153

  • karenr
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Like Mel, I have had ITP for many years (almost as long as Mel), and while it is often inconvenient, it is rarely life-threatening. Read up on the disorder on this site. Feel free to ask questions.

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Im really confused please help? 2 months 3 weeks ago #67156

  • Ntkl79
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I will go with her to every appointment and make notes of everything said. Great idea I will definately keep note of her platelet count.
Good luck with your appointment too I hope it all goes well xx
I will definately update tomorrow and thank you again for everyones replies, it really does give me strength and also the information that I can not find online x

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Im really confused please help? 2 months 3 weeks ago #67157

  • Hal9000
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Ntkl79, is your sister allergic to steroids or something? Most everyone starts out with steroids first.

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Im really confused please help? 2 months 3 weeks ago #67158

  • Lman
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I knew TPO's are surfacing as a second line treatment, but it's interesting that someone uses them as first line treatment!! :)
Ntkl79, Eltromboag is a nice drug and her doctor is so wise!
don't worry about itp, almost all of us, are doing fine ;)

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Im really confused please help? 2 months 3 weeks ago #67159

  • JJ
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The clotting drug will be something like tranexamic acid. It's usually only given when there's bleeding like nose bleeds or blood blisters in the mouth. I was given it a couple of times early on but not often.

Where are you in the UK? I'm in London. It sounds like you have been referred to a good haematologist who knows what they are doing. Your sister might want to join the UK ITP Association.
www.itpsupport.org.uk/

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Im really confused please help? 2 months 3 weeks ago #67161

  • Ntkl79
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Hi everyone,
The appointment went well, her count has gone from 15 to 41 so they said she doesmt have to take the blood clotting medicine anymore. Her iron is very low so they will give her a drip of iron on wednesday as it works quicker than being prescribed tablets. We are aldo meeting the itp team at the hospital so we know who is who. They also recommended an app which we downloaded from the app store called itp pocket log. Its quite good as you can store your symptoms, results medications and doctors details. My sister knows that this is still early days but felt relieved that her count had not lowered and that all questions were answered. First time ive seen her smile in days. Thank you again to everyone who responded it really helped and I also hope everyone is all good xxx

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Im really confused please help? 2 months 3 weeks ago #67169

  • MelA
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JJ - just curious if you were given a clotting test before being given a clotting drug? We had a group of ITPers here who would get together [unfortunately that has gone by the wayside] - one had a stroke when her count was at 5,000.

Ntkl79 - super, so glad to her your sister's count went up and she is smiling again! Sounds like she is on the right track w/her doctors etc. An app called ITP Pocket Log, very interesting. Keep us posted!!

And Ntkl79 thank you for thinking of me and my hematologist appointment yesterday - all went well and I really really like this doctor, not to mention he makes me feel like I am his only patient.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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