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Newly diagnosed but was ttc 9 years 11 months ago #29961

  • Londonbound
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Hi all,

Hubby & I were trying to conceive #2 when I was diagnosed with acute onset itp in December. I've had predisolone & ivig over the last 4 weeks and my count is 16 as of yesterday. Rituxan is being mentioned as the next step but I know this means no ttc for at least 12 mths - if it works.

I'm very upset that I have itp & very upset about the impact it may have on my life plan. My little girl is 22 mths old & I always wanted 2 close together.

I know it's early days & I'm still in an acute phase of itp. Should I go along with the rituxan & see what happens or ask about other options? I'm also worried that predisolone & ivig are the "go to" treatments in pregnancy & they don't work for me. Does this make pregnancy even more high risk for me?

I feel like I'm only just beginning to come to terms with the massive changes itp brings. Any experiences or thoughts would be welcomed. Thanks :-)

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Newly diagnosed but was ttc 9 years 11 months ago #29978

  • Ann
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It's really up to you whether you try the rituxan and then wait a year when of course you could relapse and be back where you started, or take a risk and get pregnant and try something else. I know what I'd do but then I'm a bit of a risk taker.
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Newly diagnosed but was ttc 9 years 11 months ago #29979

  • 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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Kat:

This is a brand new, very credible article - just sent to me today. Some of it may not apply because it's about gestational ITP, but there are sections that will be relevant.

bloodjournal.hematologylibrary.org/content/121/1/38.full
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Newly diagnosed but was ttc 9 years 11 months ago #29988

  • Londonbound
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Ann - thanks for your insight. I'm currently still on a high dose of prednisolone so can't ttc just yet but I'm negotiating dropping off the steroids quite quickly as they're doing nothing for me. I swing between ttc right now (going with what I want) & waiting, having the rituxan and hoping I'm in the 20% of people who get a longer remission. I want another baby desperately, but I also want to be a healthy mummy to my little girl. It feels like a rock & a hard place right now :-/ and I'm a pretty rubbish risk taker lol!

Sandi - thanks so so much for this article. I'm going to print it off & take it with me this afternoon to see my consultant. I'm going to get my highlighter out too!!! If you don't mind me asking - how did you cope with ITP during pregnancy? I'm worried that as I haven't responded brilliantly to steroids or Ivig that I would be at high risk during pregnancy.

In case you haven't spotted - I'm a bit of a control freak and I'm trying to plan for outcomes I can't predict!! But knowledge is power & all that - thanks for your replies!! :)

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Newly diagnosed but was ttc 9 years 11 months ago #29995

  • 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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Kat:

I'd already had my 3 children before I was diagnosed with ITP. Can't help you there.
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Newly diagnosed but was ttc 8 years 9 months ago #39953

  • tigereyes
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I got pregnant after 9 months from my rituxian. My boy is healthy. I needed no treatment through out my pregnancy and had a c section with no complications. My second I got pregnant and they are 18 months apart. I had so many problems with my second pregnancy. I had gestational diabetes brought on by the steroids. I was on high dose steroids and did IVIG every other week. Due to complications from the diabetes he was born 7 weeks early. He is now a happy healthy 16 months old. But had a rough start with a 2 week NICU stay.

As a mother you have to make the decision to be healthy. If your not healthy you can't take care of the one baby you have. Let alone 2. I say get your ITP under control then ttc. It's hard to be away from your kid(s) I was just admitted for another round if IVIG and I need to be away from my boys. It kills me. I'm considering treatments I never considered in the past.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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