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TOPIC: Cessation of breastfeeding & ITP remission

Cessation of breastfeeding & ITP remission 4 years 2 months ago #47217

  • emmily009
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Hi I have been in remission for 5 years with normal counts (including a normal 1st pregnancy) at 36weeks in my second pregnancy my count dropped from normal to a count of 7 and now my ITP is back. I have 7week old baby and I'm breastfeeding exclusively. Has anyone been in a similar predicament with immune thrombocytopenia (not pregnancy induced) found that they went into remission after stopping breastfeeding?
Very over steroids & Ivg infusions and wanting to avoid a splenectomy.
Thoughts??
Thankyou :)

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Cessation of breastfeeding & ITP remission 4 years 2 months ago #47379

  • Katsim
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Hi emmily,

Congratulations in your new arrival!!

Didn't want to read & run but I'm not sure I can help much tbh. I have had itp since dec 2012 (not pregnancy induced) and am now expecting baby number two in July.

My counts have gone up since I fell pregnant and I'm wondering if they may stay up - or plummet in late pregnancy like yours did. Did they check baby's count when he/she was born - just out of Interest what were they?

There are lots of other treatment options you could try - but I'm not sure there are any you could safely breastfeed with. I suppose the only way to know is to stop bf & if it causes a remission then great! And if not there are plenty of other treatment options out there - where are you? In the uk you may be offered rituxan next - it doesn't have to be splenectomy.

Depends when you're ready to stop bf though. the steroids & ivig might be a price to pay to continue bf. And if you're desperate for another treatment it might not be ok to continue the bf. have you talked to your haemo about your options?

Sorry if that's a bit waffly & not all that helpful. Hope you can get a bit more info & make the best decision for you & your family :)
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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Cessation of breastfeeding & ITP remission 4 years 2 months ago #47380

  • emmily009
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Thanks for the reply Katsim.
I really hope your count stays up for the remainder of your pregnancy.
My baby was born without ITP thankfully and had a count of 180 at birth which rapidly rose over the week.

I'm from Sydney Australia. I had a count of 59yesterday which has dropped in a week from 220. The IVIG only lasted for 2 weeks so very annoying.

hematologist has mentioned rituxan but has said it's also only a temporary fix and will constantly involve dosage adjusting...and also has lots of side effects.

Really don't want to stop BF but also not keen on a splenectomy or the drugs! Being very picky I know. Such a frustrating disorder!!
Did you have ITP with your first pregnancy?

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Cessation of breastfeeding & ITP remission 4 years 2 months ago #47381

  • 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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emmily009 wrote: hematologist has mentioned rituxan but has said it's also only a temporary fix and will constantly involve dosage adjusting...and also has lots of side effects.


That doesn't sound like Rituxan. I was thinking maybe it was N-Plate, but that doesn't quite fit either. For most, N-Plate side effects are not usually that bad.

I'm not sure that either of those drugs can be used while breast feeding.

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Cessation of breastfeeding & ITP remission 4 years 2 months ago #47496

  • Katsim
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Hi emmily

I hear you about being a frustrating disorder. We were trying for a baby for almost 2 years (other health issues) so I refused many if the drugs that can't be used in pregnancy. I was very picky too!! Lol! I didn't have itp in my first pregnancy - in fact (looking back) my platelets were well over 300 when I delivered her. So this is all new to me. Well - in pregnancy. I'm pretty used to the itp itself now.

So glad your baby's count is good and is rising. That is great news! Shame your count is still dropping so quickly though. Mine did exactly the same when I had ivig :(

I'm not sure your haemo has quite the right info about rituxan. Here in the uk there is one infusion a week for four weeks. And then if you respond within 12 weeks see how long it lasts. I've never had it, but several people on this site have had long re missions from it. N-plate would be a weekly injection and would need constant updates until the dose is right. Neither are safe for breastfeeding though.

Is your haemo a specialist in itp? Can you get a second opinion?

When I thought might not have any more children unless I found a "safe" way to treat - I was considering splenectomy. But me & hubby only want two and this pregnancy has been stressful for us both. So - after this - n-plate would be my personal first choice and rituxan second choice. They had their chance to get my spleen and that window of opportunity has passed!! :) if you don't want the splenectomy - check out the treatment page here. Lots of people have tried alternatives!

Kat :)
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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