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Introducing myself... 7 years 5 months ago #49233

  • livinwITP
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Hi,

i am a 30something year old ITPer. I have had ITP as a child but went into remission for many years after splenectomy. ITP returned after my first pregnancy and stayed since then. i have not had treatments outside of pregnancy but my children were born with low platelets and had to get treatment. The first one was just steriods for five days and the second one had to get ivig three times. Now the third one is still not recovered despite steroids and ivig and is going on her third month....anyone else had such a situation with a newborn?


My average platelet count for the past year has been 13,000 or less. I dont really stress over the ITP part too much but I dont want anything to happen to my baby. Also, for me, personally the greatest setback of having ITP has been not being able to breastfeed my kids.

I scare my family, friends,and even my doctor by my non chalant attitude towards this condition. It is not that I do not want treatment but I want successful treatment(greater than 90% success) and it seems to me none is out there.

Anyways, would love to hear from anyone and connect with you guys online.

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Introducing myself... 7 years 5 months ago #49243

  • meredithjane
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Hello there,
Welcome to our support group.
I can't relate to your situation with pregnancy/babies etc. as I developed ITP at 48. However I do understand your attitude & have similar thoughts about treatment.
You are a busy young mother & I hope you are getting the support & encouragement you need.
Best wishes,
mj

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Introducing myself... 7 years 5 months ago #49335

  • 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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Hi. I'm glad that you joined our group. Your attitude is great and I'm glad that you do not let ITP stress you out.

There are some newer treatments (N-Plate and Promacta) that have a higher success rate than the older treatments, so if you're ever ready to treat, those two are pretty good options.

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Introducing myself... 7 years 5 months ago #49495

  • Winnifred
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Just want to say welcome!

Oh and as for the attitude that is me always shrug off my low counts. Have a sister who is a RN and has basically told me not to tell her my counts because when i'm like oh well i'm low she's in panic! lol

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Introducing myself... 7 years 5 months ago #49511

  • 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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Welcome from me too.
I can't comment on the children side of things as mine were in their 30s when I developed ITP a year ago.

I'm currently on the fostamatinib trial and have given up stressing out about my counts..if they go up so be it if they go down ditto.

I've learned to live with it, just not got as much energy if they go below 20. I would like them to go up & stay above 50 to prove the drug works as it will hopefully become a further option for people who still have their spleen which I know is of no use to you but maybe for others.

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