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ITP and Pregnancy

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14 years 3 months ago #488 by ilauretano
ITP and Pregnancy was created by ilauretano
Hello,

I was diagnosed with ITP about 7 years ago. My hemotologist did all the regular tests to try to determine why my platelet counts were low, everything came back negative so he diagnosed me as ITP. I don't take any medications. My platelet leves for the past 7 years since being diagnosed have not been higher then 100,000. The highest I think I've been testest with is about 92,000, but the lowest I've tested is about 51,000. Most of the time it stays at the 60,000 count.

I don't mind living with this because it has never hindered me in anyway, (except when I had my widsom teeth extracted...the surgeon would only operate in the hospital and she made me have a transfusion of condensed platelets the day of the surgery because my count was too low --51,000) But other then that it's never really been an issue.

However, I am getting married next year and my Fiance and I will start trying for children soon after. Now is about the time that I am beginning to get anxious... because my hemotlogist said this would only come up again when I wanted to become pregnant.

My question is.... Has anyone had a healthy pregnancy with their platlet levels being around 60,000 count? I really do not want to have to take any medication.... has any women with ITP in this range...gone through a successful drug-free pregnancy?
Please let me know, as well as what was involved with the pregnancy and delivery. What I got from my MD when I breifly discussed it with her was she would refer me to a hemotologist which specializes in high risk pregnancy...and my pregnancy would be monitored...as well they would probably have platelets on hand. Is that the extent though? Will the specialist be their during the delivery?

Thanks for any feedback and experience.

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14 years 3 months ago #705 by gsh
Replied by gsh on topic Re: ITP and Pregnancy
60 is a great count. Many ITP women have had babies. There are some reviews out there documenting this. There is a good chance you'd need some treatment if you got below 30 or 20. Some women's count goes down during pregnancy but some go up - you really can't predict! You'd need 75 to get an epidural but a cesarean is not required. There's a small chance the baby will have your antibodies and therefore low platelets in the first week or so but you'd deal with it then. I imagine your hemo and the highrisk obgyn would be there.

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  • youngjoan
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  • I founded PDSA after recovering from ITP (7 failed treatments,zero count.) Read my story on the web site (search on 'success story.)Read more about me and my book, Wish by Spirit, at www.joanyoungwrites.com
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14 years 3 months ago #890 by youngjoan
Replied by youngjoan on topic Re:ITP and Pregnancy
PDSA has a very nice booklet on ITP and Pregnancy. You can find it under the Products and Publications section/Free publications.

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14 years 2 months ago #1059 by Rosa L
Replied by Rosa L on topic Re:ITP and Pregnancy
I too would like to hear some real-life stories about ITP pregnancies.

What exactly does monitored mean? How often do you have to have blood tests? Do you have to have any treatment at all if the platelets drop below a certain level? if so, which treatment is safest for mother and baby? How sucessful was the treatment? Was there any complications during labour? How did the doctors deal with it? How long did it take the mother to recover from giving birth?

I mean, I would like some real answers. I'm sure we've all read all the publications about ITP and Pregnancy but I would like to know what to expect rather than be told that the majority of women deliver health babies, bla bla bla, bla bla bla... What about the minority of women? how do they deal with it? Nobody wants to talk about that for some reason. It sounds like it's up to the doctors and we shouldn't worry our pretty heads...

:dry: Sorry if I sound stressed out. I've been going round and round trying to find proper info and always end up reading the same robotic vague bits of so-called information.

I am in a very similar situation as Ilauretano and would really like to hear about different (real life!) pregnancy experiences.

Thanks

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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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14 years 2 months ago #1083 by Sandi
Replied by Sandi on topic Re:ITP and Pregnancy
Rosa:

There are no real clear answers since everyone is different. "Monitored" means frequent CBC's. How often depends on how the count is. Someone with counts of 100 might only need a CBC once a month while someone with a count of 20 might need one every week.

Treatment is usually suggested if counts get low; when treatment is initiated depends on the doctor....they are all different. But yes, treatment is usually recommended. Prednisone and IVIG are the two treatments of choice during pregnancy because they are the safest. The level of success differs with each patient. Some respond and some do not.

While I have not gone through a pregnancy with ITP, I've read plenty of stories over the years. Most deliveries have gone very well. If platelets are low during delivery, platelet transfusions are sometimes used.

Recovery normally takes as long as a recovery for someone without ITP. ITP does not hinder that for the most part.

There was a woman here years ago who had counts in the 20's for her entire pregnancy and delivery. They never went up, even with treatment. She had a successful delivery and did just fine. There have been plenty of women who have talked about it over the years....you are just here at a quiet time. Look at the old discussion boards and search it. You might find some stories.

I wouldn't say that everything is up to the doctors and the patients are just compliant. Many patients here have been very involved in decision making, as they should be.

I'll try to dig up some people to post here for you, okay?

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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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14 years 2 months ago #1084 by Sandi
Replied by Sandi on topic Re:ITP and Pregnancy
You can look through these:

discuss.pdsa.org/forum.asp?FORUM_ID=19

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14 years 2 months ago #1132 by gsh
Replied by gsh on topic Re:ITP and Pregnancy
Rosa - I'm with you on seeking more than the general ITP and pregnancy publications and broad generalizations. Although I like that they are encouraging and positive, I want to know if I would be in the small percentage that are complicated and pregnancy goes really bad. I've done the searching (the old forum is great for this but you ahve to take the time to dig) and still feel pretty positive that pregnancy is very possible with ITP.

Here's the most comprehensive study I've found. You can also look for the references:
bloodjournal.hematologylibrary.org/cgi/reprint/102/13/4306

This is one of stories that really struck me. It's basically exactly what I fear but at least we know someone got through it:
discuss.pdsa.org/topic.asp?TOPIC_ID=25728&SearchTerms=CSection

good luck

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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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14 years 2 months ago #1145 by Sandi
Replied by Sandi on topic Re:ITP and Pregnancy
I think it's important to point out that there is a HUGE difference for those who do respond to treatment.

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14 years 2 months ago #1172 by Rosa L
Replied by Rosa L on topic Re:ITP and Pregnancy
thank you all for your replies :) I think by reading more true-life stories I feel more confident in dealing with whatever happens.

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14 years 2 months ago #1184 by gsh
Replied by gsh on topic Re:ITP and Pregnancy
Thanks for pointing that out Sandi. I worry one day my treatments will suddenly stop working but what good is worrying about the unknown I guess.

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14 years 2 months ago #1408 by Magdalena_BG
Replied by Magdalena_BG on topic Re:ITP and Pregnancy
hello everybody!

i'm 30, an adult with ITP, and i am pregnant in the 6th month :)
since i was diagnosed, almost 2 years ago, my count has fluctuated between 50 and 100. i do a test approximately once a month - yesterday it was 84, the previous two months - 74, which is quite good count actually... maybe this should be called "light ITP" ;)
i don't take any medications and the only supplementation i take is fish oil, sometimes replace it with cold-pressed flax-seed oil (i haven't noticed any drop from omega-3).
i feel in very good shape, hope it will be like this till the end, since i want to have natural, active birth :)

will keep you informed ;)

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14 years 2 months ago #1433 by gsh
Replied by gsh on topic Re:ITP and Pregnancy
welcome Magdalena! thanks for checking in and keep us posted! I hope they stay up, sounds like they might!

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14 years 2 months ago #1822 by redchilli
Replied by redchilli on topic Re:ITP and Pregnancy
hi! I am a 28 year old. I was diagnosed with itp in summer 2009 while pregnant. If u wanna talk to me just add me. i dont feel comfortable posting up my full story on the open message boards as my story is a bit sad and could upset people. but i will tell u more if u are interested xxx

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14 years 2 months ago #1957 by donovm
Replied by donovm on topic Re:ITP and Pregnancy
Hi!

I am also 30 years old and have had ITP for about 2 years. I've been a pretty mild case, hovering anywhere from 50 to 115 (with use of Bloodwell and Restore Immune) and have dropped below 30 twice and done a dex pulse both times which brought me over 150. I am now stopping Bloodwell because I don't know if I should be taking Chinese herbs during pregnancy.

I just found out that I'm pregnant! I am only about 6 weeks. I still need to inform my hematologist, etc. I'd love to hear about what you have been through so far. Do I need a high risk ob-gyn??

Congrats to you and I'd love to hear from you and anyone else that has been through a pregnancy with ITP.

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14 years 1 month ago #2374 by donovm
Replied by donovm on topic Re:ITP and Pregnancy
Hey Magdalena,

I just went to my hematologist today and my count was great...109. He gave me an h1n1 vaccine and I am freaking out about it a little bit. I have been reading a lot of negative articles and worrying myself. Did you get the vaccine? Was it safe for you? Just curious. Thanks!

Michelle

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14 years 1 month ago #2375 by Magdalena_BG
Replied by Magdalena_BG on topic Re:ITP and Pregnancy
hello,

i don't know why your doctor thinks you need this vaccine... i thought the pig-flu scare was over. and i'm not a fan of vaccination.
109 is close to the normal count :) in fact any count over 50 doesn't require medication.

i think what is most important during pregnancy is to be relaxed, calm, to eat healthy, think positively and have enough fresh air and exercise.

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14 years 1 month ago #2718 by Punk1209
Replied by Punk1209 on topic Re:ITP and Pregnancy
Hi,

I had a pregnancy with counts hovering around 100K, I ended up with preeclampsia, but that really had no bearing on the ITP. My daughter was one of the few that ended up with ITP, but she's been capable of holding up counts around 80K-100K so we've not had to do any treatments. She's 12 now, and doing really well. I was scared when I found out I was pregnant, but it was completely worth it.

Best of Luck

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14 years 1 month ago #3362 by Cassie25
Replied by Cassie25 on topic Re:ITP and Pregnancy
Hello Everyone!

First I must add that I am so glad to see this discussion topic and am happy to have any input on the matter.:) Short overview, I have had ITP pretty much my whole life and for me my comman platelet levels were around 70,000. Its never bothered me, nor have I had any problems. I dont honestly even bleed that bad, when I get a cut.

I am currently 30 weeks pregnant. I know there were some questions in regards to monitoring during pregnancy. The kind of monitoring I am receiving is once a week doctor visits and CBC every week. I am also in the care of a neonatal specialist and primary OB. I HIGHLY suggest having specialists.

Things were going pretty well in the beginning until about 27 weeks when my platelets dropped to the 50's. The doctors decided that it was necessary for me to be on Prednisone. I was a wreck when I heard this news! I didnt want to be on drugs, I was scared for the baby more than anything. It was a very hard decision, so I admire those of you who are seeking answers now, it can only help prepare and benefit you for whatever may happen.

Things have slowly gone down hill for me, prednisone is not a fun drug and does have a lot of negative side effects. They put me on a high dose which bumped by levels to 160,000, but then as a started to taper they dropped drastically back to the 50's, so again I was put on a high dose. Something that was not comforting to me. I know that very little crosses the placenta, but I still worry. I do wish I could have done this pregnancy without the drugs, but unfortunately the doctors believed that it would be safer to start treatment. Its scary for being a first time mom and I understand all of the concerns posted.

I will continue to post my progress for all, so that maybe my story and outcome can help someone else. Please feel free to contact me if you would like to know anything else. I hope the best for everyone in this journey.

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14 years 1 month ago #3363 by Cassie25
Replied by Cassie25 on topic Re: ITP and Pregnancy
Hi! I just posted something pretty relevent to what you are experiencing. I cant find where it went under the ITP pregnancy board, hahaha. But I wanted you to know if case you can track it down. My name is Cassie25. :)

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14 years 3 weeks ago #3851 by gsh
Replied by gsh on topic Re: ITP and Pregnancy
Nice to hear of pregnant ITPers out there! Please keep in touch. I've had ITP for just over a year (diagnosed 8 months after giving birth). We're thinking of having a second child. cheers, giselle

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14 years 3 weeks ago #3855 by debidoll
Replied by debidoll on topic Re:ITP and Pregnancy
Hi, about 7 years ago I was diagnosed with ITP and at that time I was 6 1/2 months pregnant. I knew my count was kinda low from the first blood test but until the sugar test nothing was ever brought up. My pregnancy was fine. At the sugar test my count was 60 so I was sent to a hematologist. My count kept dropping ( down to 28) and I was put on Prednisone. I got gestational diabetes as a result but 2 weeks into that my son was born very healthy. My counts continued to drop after he came and when he was 3 months old my counts drop below 10. I had vincristine, danazol, and IVIG ( other things I don't recall) and I had a splenectomy when my son was 5 months old. 4 months later I found out I was 4 months pregnant with my daughter and despite all it was a fine pregnancy and she was healthy too. I am still in remission but was told more pregnancies might trigger it again. I hope I helped some and let me know if I can answer anything.

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13 years 9 months ago #7513 by cloughterm
Replied by cloughterm on topic Re:ITP and Pregnancy
I have been fortunate in that I have two healthy children. I am now pregnant again with my third child. My counts were about the same as yours. I was in the UK when my second child was born and had Rituxan the month before I conceived. This helped me through my second pregnancy. Studies there are different and have shown no ill effects to babies born to mothers who have received Rituxan (Rituximab).
My hematologist told me today, here in the US, that there have been studies of women having healthy babies while receiving Rituxan when pregnant. This may be an option for me if my counts go down to single digits.

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13 years 7 months ago #9043 by danie09
Replied by danie09 on topic Re:ITP and Pregnancy
I am afraid that my ITP might be back. ive been in remission for a year now and i had a splenectomy back in september of 2009. I have all the systoms of being prego and I have been extrememly tired, moody, and breasts killing me. and when I went to brush my teeth today I realized that i had a few dots in my mouth behind my lips. Is my ITP is coming back because i am prego. really need some advice and what I should do bc i am really conserned and afraid. My doctor aptmoint for my OBGYN isn't until nov 12th. thank you.

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13 years 7 months ago #9062 by tigereyes
Replied by tigereyes on topic Re:ITP and Pregnancy
Bleeding gums is a common pregnancy symptom. If your concerned about your counts I would contact your hematologist and get your counts checked. I know about 3 weeks ago everytime I brush my teeth it bleeds ALOT. My counts are 30. Its just a common pregnancy symptom.

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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13 years 7 months ago #9106 by AnnaB
Replied by AnnaB on topic Re:ITP and Pregnancy
Hello,

I need advice plz.
I have ITP more then 15 years. Till before 4 years ago I was on prednison. Now, 4 years I am without prednison and my platlets around 60-70.
Recently I happily found out that I am pregnant.
Now my OB wants to put me on medrol 4 mg a day for 2-3 weeks to suppress my immune system. I spoke with my hemo, he thinks that it is good idea.

First of all I read about side effects of medrol and one of them that it can slow grouth of the baby. It scarries. Second, I was so happy not to be on any treatment for 4 years, I remember how awfull I felt being on prednison.
But for sure the most important think for me that everithing will be OK with the baby.

What do you think? I don't know what is better to take medrol or not...

Thank you.

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13 years 6 months ago #9130 by gsh
Replied by gsh on topic Re:ITP and Pregnancy
I think 60k is a safe platelet count that doesn't need treatment (pregnant or not) UNLESS you have bleeding symptoms. Everyone is different but unless the ITP is causing you problems at that number I don't see why they want to treat you at this time. Keep us posted on the pregnancy!

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13 years 6 months ago #9140 by lizzels
Replied by lizzels on topic Re:ITP and Pregnancy
I am 33 weeks pregnant and my hema has seen no reason to treat during my pregnancy as long as my count stays above 50 and I have no symptoms. Even below 50 he probably would not treat except for close to delivery time. I will be starting treatment soon to try to get my count above 100 so I have the option of an epidural, but that is because the anesthesiologists require that count. My hema says a count of 50 is fine for a c-section or vaginal childbirth.

If you are having symptoms, that makes things different, but if you are not having symptoms I'm not sure why you need to be treated with a count of 60-70. But again, everyone is different and every doctor is different.

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