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Nplate and Pregnancy

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10 years 3 months ago #39881 by ret9
Nplate and Pregnancy was created by ret9
Hi everyone! It's been a while since I have posted.

I am currently discussing with my hematologist and high-risk OB whether or not it is safe to get pregnant while taking Nplate.

I was diagnosed with ITP in 2010; steroids do not work, Promacta recently stopped working in July 2013, but Nplate still works. Without treatment, my counts have been around 29k, but I have had bleeding inside my eye at a relatively safe count of 55k. My hematologist feels it is too risky to stop the Nplate since it is likely that my platelet counts will go down during pregnancy. She also says that the chances of IVIG working are too low and the effects might not last longer than a week. The risk of the Nplate to the baby is unknown, so she does not feel comfortable telling me it would be safe to get pregnant. I plan on meeting again with the high-risk OB to hear what she has to say after consulting with other doctors at the nearby university hospital. I am also waiting to hear what the manufacturer of Nplate says in regards to their pregnancy registry. Unfortunately they will only give the results to a doctor or their representative.

After all the background, my main question is has anyone here had a safe pregnancy while on Nplate? Is it likely to cause a miscarriage or birth defects.

I realize that no one may have an answer to these questions, but I figured I would try. Thanks for your help.

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10 years 3 months ago #39882 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
I do not know the answers but am very curious. I would love to have a baby and do not want a splenectomy. IVGs stopped working. Rituxan didn't work and prednisone didn't work. Promacta and Nplate both work. In my mind I have pretty much said I will be adopting, but if it is possible to be on one of these drugs, that would be great

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10 years 3 months ago #39894 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
I am going to an itp specialist in march who actually studies itp in pregnant women and I will ask him what the exact risks are and report back.

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10 years 2 months ago #39910 by ret9
Replied by ret9 on topic Nplate and Pregnancy
That would be great! Thank you! I'll post an update when I get more information from the high-risk OB.

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10 years 2 months ago #40237 by sharonb
Replied by sharonb on topic Nplate and Pregnancy
I was told by my Hematologist that Nplate is not safe to take with pregnancy, due to the bone marrow changes and so forth. Or as well as the fact that it is a newer drug and they really don't know the outcome.

I have thought about this issue now for a while as well, and very worried since options are limited.

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10 years 2 months ago #40264 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
I'm going to the specialist on mon and will ask and see if there are other options because like you ladies I want a baby too

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10 years 2 months ago #40265 by sharonb
Replied by sharonb on topic Nplate and Pregnancy
Please share what you learn. I'm not ready at the moment, but hoping in the next few years. My nurse practitioner and Hematologist (who also dr. of obgyn studies pre/neonatal Itp) feel its possible to manage pregnancy, though obv high risk, and heard IVIG is possible but something like it may be too much fluid?

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10 years 2 months ago #40270 by Rob16
Replied by Rob16 on topic Nplate and Pregnancy
Antiphospholipid syndrome is more common among people with ITP. It is also a major factor in miscarriage and stillbirth. Sandi is a big advocate for testing, and I would think that holds especially true if you are contemplating pregnancy.

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10 years 2 months ago #40277 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Hi everyone! I hope you all are well. Thanks for all of the replies. I finally have a bit of an update. I saw both the high-risk OB and a hematologist at a nearby university who would likely be treating me if I were to become pregnant. The university hematologist feels that she can treat me, but she agrees that there are just too many unknowns with Nplate and pregnancy. Our game plan is to stop taking the Nplate to see where my platelet counts are with no treatment to get a baseline number since it has been a while. She is currently recommending getting a splenectomy to try to get my platelet counts higher without other treatment in the hopes that we could just watch the count during pregnancy. If they get too low, the plan would be to try IVIG or azathioprine.

I am not sure how I feel about a splenectomy, and the university hematologist is concerned about trying to manage platelet counts with IVIG for an entire pregnancy, particularly the renal implications of possibly having to do a lot of infusions. My regular hematologist is not on board with me stopping the Nplate, but I plan on talking to her next week about it. I also plan on speaking to the university hematologist next week once and I'll let everyone know if anything new comes out of our discussions.

One last thing - although there is a pregnancy registry for Nplate, there is no way to get this information from the drug company. The only information they will give to your doctor are the two case studies that are accessible from the PubMed website. As a patient, they will not give you anything.

Thanks everyone for your support!

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10 years 2 months ago #40282 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
I will get my doctors opinion on Monday. I think he will have similar thoughts about the Nplate. My questions are would he be willing to try me on Immuran first to see if that can up my counts. I know he also talked about high pulse dexamethazone with Rituxin. I really don't want a splenectomy, but will do it if all else fails.

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9 years 11 months ago #41723 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Hope everyone is doing well. After a couple months of watching my platelets and intermittently treating, I have another small update. I stopped taking Nplate and my counts fell to 20k. My hematologist and high risk OB do not feel that 20k is a safe enough starting point and feel that the only way I should consider getting pregnant is after doing a splenectomy that gets my counts up to 50k at a minimum. Other than that, they think having a baby would be too dangerous. Right now I am stuck and haven't decided what to do. I don't like the thought of going through surgery and possible complications and then have it not work and still not be able to have a baby. Thanks everyone for your continued support. Good luck to all who are in a similar situation.

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9 years 11 months ago #41729 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
Ret9,

I def understand what you are going through. I go back and forth on the splenectomy decision because I want to have a baby as well. I know kellirae on here is pregnant, had a failed splenectomy and is doing IVIG I think weekly. I know one doctor at the conference said that Immuran is safe during pregnancy.

My wanting to have a baby is getting stronger. I'm going to wait a year and make a decision on a splenectomy. I think I have to be at an emotional state where if it fails I will be ok with adoption. It's so hard.

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9 years 11 months ago #41748 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
Vdeutsch & ret9 - I just wanted to add my experience talking to my haemo here.

I am currently trying for a baby (I also have the joy of having pcos so conceiving is proving challenging & very frustrating!) and have had ITP for 18 months. My counts for the first year were bottoming out at 1 if I wasn't on both birth control & prednisolone. I tapered off both from dec 2013 to march 2014 and am now on neither (woohoo!). My counts have ranged from 20 to 50 and fluctuated over days or weeks with no rhyme or reason to it.

My haemo is happy for me to keep trying. He feels that initially counts in the 20's would be fine in pregnancy. Then they would add steroids to see if they could raise the count closer to 50 for the majority.

But here's where it gets interesting.... In my case prednisolone works much better when I take a combined oral contraceptive. After some chats on here (see secret women's business) and talks with my haemo it seems that progesterone is cleared from the body in the same mechanism as prednisolone. So when we have lots of progesterone in our system, steroids take longer to clear out and work more efficiently. My haemo reckons that (in theory!!!) a pregnant woman who has ever increasing amounts of progesterone due to pregnancy *may* well respond better to low dose steroids as a maintenance treatment.

All theory but interesting nonetheless. Just thought you might like to know. Additionally, I'm currently seeing a fertility specialist who had no issues prescribing me with medication to induce ovulation when my count was in the 20's. I have no bleeding symptoms until my counts get closer to 10.

Good luck ladies - hope we all get our little miracles :-)

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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9 years 11 months ago #41761 by Vdeutsch85
Replied by Vdeutsch85 on topic Nplate and Pregnancy
Katsim

I just want to wish you the best of luck with everything. My friend had a lot of issues conceiving ( does not have itp however) and is pregnant after a year and a half.

That is a very interesting theory. Unfortunately I was on birth control and prednisone at the same time and it did not raise my counts at all, so it's not an option for me,

I'm like you I don't really have any symptoms unless my counts are under 10.

I saw dr. Mccrae at Cleveland clinic who is basically an expert on itp and pregnancy. I have been focused on the day to day of life at the moment and haven't read his articles but he is really great and I bet you could learn a lot.

My mom brought up having a surrogate. I was a little weirded out with the concept. I think for me it will be my biological child inside me or an adopted one.

I hope all three of us will have little miracles one day.

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9 years 10 months ago #42503 by ret9
Replied by ret9 on topic Nplate and Pregnancy
I am having the splenectomy on August 6. I'm worried it won't work, but it's the only option the doctors are giving me to get through an entire pregnancy safely. I'll try to post updates about how it goes. Thanks for your continued support.

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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9 years 10 months ago #42507 by Kelirae24
Replied by Kelirae24 on topic Nplate and Pregnancy
I got pregnant while on nplate I have already had a splenectomy with no treatment I am anywhere from 2-5 yuck ok but since I got pregnant my dr took me off nplate and am currently getting ivig every week doesn't last long but it's doing it's job fingers crossed it continues for four more months! My platelets lowest while pregnant have been 2. Good luck with your splenectomy! :)
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9 years 10 months ago #42515 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
Hi ret,

How are you feeling about splenectomy? I'm currently in partial remission (still trying to conceive with no luck) and my counts are 50ish. I had pretty much decided that splenectomy would be my next option - & still is if my counts drop. I think that life is for living and my own personal choice is that I want a life with more children.

Wishing you lots of luck for your splenectomy. I have everything crossed for you & truly hope you get remission from it.

Are you planning open or key hole surgery?

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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9 years 10 months ago #42519 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Hi Katsim,

I don't really want to do the surgery, but my platelets go down to 17 without treatment. My doctors don't like IVIG as an option for an entire pregnancy due to it possibly decreasing in effectiveness and renal side effects. The goal is to get my counts up to 50k. It should be key hole surgery from the CT scan, but they warned it could turn out to be open if they see something they don't like when they get in there.

Thanks for the positive thoughts!

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9 years 9 months ago #42663 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
Key hole sounds good - fingers crossed it stays that way! How will they get your platelets up for the surgery? Hope you're feeling ok as it gets closer.

The whole children question is by far and away my biggest struggle with itp. I think about more kids everyday. I completely understand why you've chosen to go ahead with surgery you're not sure will work. Keep us posted. Sending you all the luck in the world & still thinking of you!

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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9 years 9 months ago #42671 by ret9
Replied by ret9 on topic Nplate and Pregnancy
We're going to do Nplate in the next few days since it still works for me.

Thanks for the well wishes! I'll keep everyone posted. :)

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9 years 9 months ago #42947 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
Hope it all went well today. Wishing you high platelets & a fast recovery :)

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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9 years 9 months ago #43072 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Hey, everyone!

I had the splenectomy on Wednesday as scheduled. They were able to do it laproscopic and the incisions were very small, four total, the largest of which is less than 2 cm! While they were doing the surgery, they found 2 accessory spleens, neither of which showed up on a CT scan prior to the surgery. I got to go home on Friday evening.

The pain was pretty bad the first couple days and at times it is still not fun, but it becoming pretty manageable. I am still on pain meds, but I am able to take them less frequently and only one pill instead of two. I was eating normal food the day after the surgery, although my appetite hasn't fully returned.

Now for the part everyone cares about: my platelet counts. So far, I have had two platelet counts. My platelets were 323k after the surgery and the following day, 373k. I plan on seeing my regular hematologist tomorrow and will get another CBC, but so far, so good! If things keep looking good over the next several weeks, once I am healed, I think we may finally be able to try to have a baby!

To everyone out there who is struggling with this decision, know that there are people out there who are in your shoes. You are not alone. Make the best decision for you and your family. It's been one of the hardest decisions I've had to make because of all the unknowns, and even after the surgery, it is still an unknown since it isn't a sure bet whether this will work. After months of exploring all the options and indecision, I finally decided to get the surgery. Stay strong; you will figure out what is right for you. Platelets up!

I'll keep posting updates and hopefully they will be encouraging, or at least give you another anecdote to consider. :)
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  • 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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9 years 9 months ago #43074 by Sandi
Replied by Sandi on topic Nplate and Pregnancy
That's great news! Good luck with counts tomorrow!

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9 years 9 months ago #43084 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
Oh I'm so pleased it went well!! Both in the sense that your counts are good and that you are feeling ok after the surgery. Hope you get another great count tomorrow!!

I really hope this is the start of your baby journey. I have everything crossed for you - I know the frustration you've gone through only too well. We need some more baby dust sprinkling around here!!!

Thanks for the update - keep them coming!! :)

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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9 years 8 months ago #43327 by ret9
Replied by ret9 on topic Nplate and Pregnancy
It doesn't look like the surgery worked. Platelets were down to 69k. Last week they were over 450k. I don't feel sick and I don't have a fever so I'm not sure it's a fluke. I'm going in Monday to see if they're still falling. I also see the surgeon on Tuesday for my post-op follow up. I'm trying to stay positive, but I'm not sure I can. I'll post another update next week.

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9 years 8 months ago #43329 by Katsim
Replied by Katsim on topic Nplate and Pregnancy
I don't know what to say hun ...

I've been thinking of you & hoping for some good news. I'm really sad to hear your counts have dropped since you last posted. I can't imagine how difficult this must be for you.

69 isn't a bad count in the grand scheme of itp. I'm praying that they stabilise somewhere in the safe zone for you.

Good luck for your appointments this week. I hope there's some light at the end of the tunnel for you. Keep us posted & if you want to vent we're here for you xx

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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9 years 8 months ago #43349 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Platelets down to 41k. I see the surgeon tomorrow for a follow up. I'm going to try to see how low they go, but at some point I have to admit it didn't work and either risk getting pregnant anyway or decide to adopt.

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  • 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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9 years 8 months ago #43352 by Sandi
Replied by Sandi on topic Nplate and Pregnancy
Ret:

I'm so sorry, and please don't give up hope. I have actually seen some people try Rituxan or Prednisone after splenectomy and counts stayed up for years. It's possible that could happen to you. It might be worth it to try one more time to get counts up....maybe they will stay there long enough to get that baby. At the very least, maybe the counts will at least be more manageable.

Keep us posted.

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9 years 8 months ago #43360 by ret9
Replied by ret9 on topic Nplate and Pregnancy
Thanks, ladies! I am trying to stay optimistic, but I think it's getting harder. Unfortunately steroids are not an option. They didn't work and gave me major eye problems. Luckily the eye problems resolved once I got off the steroids. Rituxan is still an option, but it seems worse than the splenectomy. What's the percentage of it working? I seem to remember the one year outlook not being a very high percentage of people's counts staying up. Also we wouldn't be able to try to get pregnant for a whole year. It's a lot to think about.

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  • 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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9 years 8 months ago #43368 by Sandi
Replied by Sandi on topic Nplate and Pregnancy
Ret:

No, you couldn't get pregnant for a year after Rituxan, but like I said, some people get much longer than that after splenectomy. Have you tried Rituxan yet? The percentage of it working is 40% to 50%. It's just an option. It's also possible that your counts will rebound. It's happened before.

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