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Severe ITP...worried fetus will have ITP 12 years 11 months ago #5506

  • jfigeley
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I was diagnosed with ITP in 03. The only thing that works for me is Nplate. Counts vary depending on my health, but usually range between 80-120. I'm 28 weeks and tried IVIG at the beginning of pregnancy, however after several week long hospital stays did not achieve very good results. I made the difficult decision of going back on the Nplate and reporting to the pregnancy registry, since effects unknown to fetus.

I have 2 other children that were born prior to ITP and this pregnancy was a "surprise" so I'm very worried about the effects my ITP will have on the fetus. So far all tests and sonos look normal. I recently took my gest. diabetes glucose test and I know that will come back positive since I had it with my other pregnancies. Just wondering if anyone has been in a similiar situation and what their outcome was. Would love to hear from you.

Jenn

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Re: Severe ITP...worried fetus will have ITP 12 years 11 months ago #5519

  • Ann
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Your baby may be born with a low platelet count because it will have your platelet antibodies but they will disappear in a short time and the baby won't have ITP.

If you haven't found the old forum, it might be worth a read. Lots of reports there of people having babies and I don't remember any of them having any major problems.

The old forum is at discuss.pdsa.org/

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Re: Severe ITP...worried fetus will have ITP 12 years 11 months ago #5532

  • 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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I agree with Ann - the baby may be born with lower than normal platelets, but they can treat that and after a few days or weeks, the baby will be fine. There is also a chance that the baby will have perfect platelets at birth, try not to worry about that.

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Re:Severe ITP...worried fetus will have ITP 12 years 11 months ago #5537

  • tamar
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Is the 80-120 count that you have with or without treatment? That's a very safe count to have a child (if everything else is fine).

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Re:Severe ITP...worried fetus will have ITP 12 years 11 months ago #5560

  • jfigeley
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Counts are 80-120 with nplate. If I miss medication they fall to nothing within a week. When I returned to nplate after trying IVIG they had to increase my dose several times to get back up. Currently at 108. We've discussed adding steriods closer to delivery to insure high count.

If they baby is born with low platelets, I wonder how they treat it until its own immune system takes over and it returns to normal. I don't respond to anything except nplate so I'm just concerned the baby will inherit my stubborn immune system.

Also, does anyone know if any research has been done with itp and cord blood? Just curious.

Thanks, Jenn

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Re:Severe ITP...worried fetus will have ITP 12 years 11 months ago #5564

  • 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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Jenn - as far as I know, the baby is treated with IVIG; not sure about steroids. I've not heard of any stubborn cases with babies (that doesn't mean they don't exist). You're in this now - hopefully everything will go smoothly. Keep the faith.

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Re:Severe ITP...worried fetus will have ITP 12 years 11 months ago #5578

  • gsh
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The chance of your baby having low platelets is low, although possible. There's no proven correlation between the severity of your ITP and the baby's platelets. Note that it is not recommended to measure the baby's platelets before birth (eg. by scalp).

read the pregnancy section of these international guidelines, just published this year:
bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

try not to worry!

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Re:Severe ITP...worried fetus will have ITP 12 years 11 months ago #5651

  • jfigeley
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Wow ....that was some great info. Saw the ob today she basically agrees with everyone else. Baby sounds good and healthy so far. Will keep everyone posted. Just need to decide if I'm going to breastfeed on Nplate now. Love this website...everyone is so great and supportive.

Jenn

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Re:Severe ITP...worried fetus will have ITP 12 years 10 months ago #6238

  • JMcNally
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Hi Jenn,
Saw your post, great to hear that you baby is healthy & everything looks good.
I was diagnosed w/ ITP in 2000 and it's been stable up until the past year & a half.

My son was born in 2005, my platelets were at a good level the entire pregnancy (between 180-220). Our son was born healthy & no ITP (I have heard that it is not a disease that can be transfered to the fetus).

I have a question for you. We have been struggling with infertility for a few years now & will be trying IVF (again) in the next few months. I will need the IVIG in the 1st trimester to fight off my NK cells (natural killer cells, the attack the embroy in my body) and steroids during my 1st trimester as well (again for the NK cells).

I am assuming that if my counts remain low (they have been way UP & DOWN for a year & a half) I am going to need Nplate during the pregancy. Have you heard of other women using Nplate during their pregnancies? Are you going weekly for the shots? I am similar to you, when I stop the Nplate I drop quickly & by a lot (400 to 8!!!!). I am a little newvous about the Nplate & pregnancy, but I want to have a healthy baby. thanks for the information & best of luck to you.

Jessica

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Re:Severe ITP...worried fetus will have ITP 12 years 10 months ago #6239

  • julissajimenez
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Hi Jenn,
I just gave bieth 3 weeks ago to a beautiful little boy. I also was worried dring my pregnancy but was re-assured by the medical team that the chance of my son having inferited by antibody would be low and sure enough, he didn't. His count was 208 when born. I delivered him vaginally as I work at the hospital and know the high risk anesthesiologist who consulted with my hematologist. They agreed that although the count was low (below 70k and when I delivered I was at 28k), that the platelets I did have were aggressive platelets. She did a test called a thromboelastogram that is done on patients having open heart surgery and she confirmed that the platelet activity was good so she felt it was safe to place an epidural. MInd you I have wanted to deliver naturally all along but when I wasnt progressing in my labor and had been enduring contractions for over 12 hours, I gave in. Had I not had this anesthesiologist and had wanted pain relief I would have been left with narcotics via an IV and I believe a much more painful delivery. ANyways, that's my story. I am now with a count of 38 k, an increase from my 24 from last week. I am holding out for now with my hematologist who wants to start Rituxan but since I am breastfeeding, I would rather not. Also, I want to give my body a chance to re-cuperate from the delivery.

HOpe this helps,
Julissa

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Re:Severe ITP...worried fetus will have ITP 12 years 10 months ago #6290

  • jfigeley
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Jessica,

No I don't know of anyone else who has taken Nplate pregnant. I am reporting to the pregnancy registry at Amgen. They referred me to an organization called OTIS, when I had the same questions. They didn't say how many women have reported, but they said they did not have any significant negative reports from anyone or from animal testing, so that was somewhat comforting. My last sono was at 20 wks and my baby is developing normally. I'm currently 31 wks and so far so good. I'm getting weekly shots. My dose has been tripled since the beginning of my pregnancy however to keep up with the baby. My counts are at 118 right now. I'll try to keep up with posting my progress. Hope this helps

Jenn

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