anyone with ITP?

LittleDucky · March 2010

Hi ladies,

I'm not pg but I'm hoping to be soon and I was wondering if there is anyone else on here with chronic ITP (idiopathic thrombocytopenia purpura - it's an autoimmune disease where your body destroys platelets for no reason). If so, I'd love to chat about how it affected your pregnancy. I know it can be very different for everyone, but it would be nice to find other people who have faced the same challenges I will face.

Thanks in advance!

Edited to fix typo

ETA: Is this board usually busier during the week and earlier in the day? Maybe I should report tomorrow or Monday. What do you think?

FutureMrsDenman · March 2010

Butting in ...

Have you been on the www.pdsa.org boards? My Aunt and my Dad both had chronic ITP and I used to lurk and post over there a lot back in the day. I haven't been over there in years, but back when I was posting there was a fairly active board with women discussing just these issues.

Good luck to you!!! Wishing you lots of platelets and an uneventful pregnancy once you start the journey!

LittleDucky · March 2010

Thanks for replying! I've been on the pdsa boards but unfortunately they aren't very active. There are a lot of posts from people who are newly diagnosed and people who had had really low counts and needed lots of treatments or have had splenectomies, but not many people with relatively mild ITP hang out there regularly.

Just out of curiosity - did your aunt have children? Or was she diagnosed with ITP after having kids?

Here's my background if you are interested and since you know a bit about ITP. My ITP hasn't been too bad. I was diagnosed in July 2008 and since then my counts have fluctuated between 40k and 80k. My ob/gyn doesn't seem too worried, and my hematologist said I'll just need to see him monthly once I get pg since counts often go lower during pregnancy. I know there is a higher risk of miscarriage in women with ITP, although the rate is not certain since most of the miscarriages are very early and if you aren't charting you might not even know that you were pg.

I'm also little nervous though because there is a significantly higher risk of hemorrhage during/after birth (by some estimates ~50% of women with ITP hemorrhage) and the anti-platelet antibodies can pass to the fetus causing low platelets in the baby at birth, meaning they often have to stay in the NICU for observation for a while if not get transfusions or IVIG. Also, you need at least a 100k count for an epidural, so there is a good chance that I'll either not be allowed to have one or that I'll need treatment for a while at the end of my pregnancy to bring my counts up, either with prednisone (which is a class C drug) or IVIG.

It's good to know that it is treatable and that both my hematologist and ob/gyn have given me the green light to TTC and feel that it can be managed, but it sure would be nice to not have to worry about it!

Thanks for listening... didn't realize my post was going to be so long!

FutureMrsDenman · March 2010

I'm sorry to hear the boards aren't very active anymore. They were a great source of info and support for my family for several years.

My Aunt never did have children - in part because of her ITP (but there were several other reasons). I don't remember her full history, but I know she had other autoimmune disorders as well (in a family of 7 siblings 5 of them had 2 - 4 different disorders apiece - UGH!). Her ITP was severe and she was almost always being treated in some way (prednisone, IVIG, Rituxin, and other drugs). I'm sorry that her story isn't really helpful to you.

I'm glad that your doctors aren't offering scare tactics and are being supportive. There are plenty of women who develop ITP while pregant and so many doctors have experience dealing with the birth experience in women with ITP. I guess I would just want to make sure your ob/gyn has that specific experience for peace of mind sake (and I'd switch if he/she didn't).

I have heard about the miscarriage & hemorrhage risks and about not being able to have an epidural. All of those thing suck. I didn't know about the risks to the baby. I've had a NICU baby myself. I hope that you don't have to go through that.

I would hate to think of you having to be on prednisone during such a time. Are there any problems with being given IVIG while pregnant or shortly before delivery? Do they ever give 6 packs of platelets prior to delivery in women with ITP? It seems like those would be better options than being on pred, but I'm not doctor. And if they would be willing to give you platelets, you could have friends/family donate platelets for you in advance.

Good luck to you! I'm sorry I really couldn't be of any help.

LittleDucky · March 2010

IVIG is generally considered to be safe during pregnancy, but the results from IVIG only last 1-2 weeks and it is super expensive, so most insurance plans will require that you try prednisone first and will only cover IVIG if you don't respond to prednisone. IVIG does work super fast though (in 6-18 hours) so it is given if you are going to be induced or have a c-section to get counts up quickly.

They will give platelets if you are hemorrhaging but they aren't the best way to deal with ITP because my body would just destroy the transfused platelets (within a day or two even). It's definitely something to have on hand for emergencies but not something they do as a matter of course.

I'm sorry your aunt had such a rough time with ITP. I've been lucky. Honestly if I wasn't getting CBCs every couple months I wouldn't even know I had it, except for the fact that I have bruises on my arms and legs most of the time. I have had no other symptoms and hope that it stays pretty asymptomatic during pregnancy, too.

My ob/gyn is familiar with ITP and I think that is one reason why she was so calm about it when I told her I'd been diagnosed and when I asked about how it could affect a pregnancy. Also, my hema and ob/gyn have their offices in the same building (different floors) and are familiar with each other's practices, so I know they can coordinate care which is a good thing.

I guess I am most worried about how it could affect my baby when I have one. Having a baby in the NICU wouldn't be fun, but as long as the baby ends up healthy that is what matters. Even when babies born to ITP moms have low platelets at birth they usually have normal platelets within a couple days. The really scary thing is that if the baby has low platelets before birth (and there's no good way to test this. scalp sampling is not reliable because there are clotting factors in the amniotic fluid that interfere and cord sampling is too risky to be worth it) then there is a risk of the baby having a fatal intercranial hemorrhage during or immediately follow birth. It's pretty uncommon (up to 2.3%), but it's still scary because it is not tied to the mom's platelet count. I could have a count of 30k and the baby would have normal platelets and no bleed or a count of 100k and the baby could die of a brain bleed.

I know there are things to worry about with every pregnancy, especially every high-risk pregnancy, and it sort of seems silly to be thinking about this stuff when I'm not even pregnant yet, but it's scary starting TTC knowing that there are all of these factors that will almost definitely affect my pregnancy. Luckily the serious problems are pretty rare and most of the more common problems are either treatable by treating the mom or the baby will be okay within a week or so after birth. I know it would be really hard to have a NICU baby but I also know that the doctors will do whatever they need to do to make sure that both I and the baby are healthy.

mandarod · March 2010

I never knew I had ITP until I was abot 35 weeks pg. My numbers weren't too bad - about 100 - at my 8 week appointment, so my OB didn't worry too much. When they started dipping lower around 35-36 weeks, she had me see a hematologist. I was scheduled for a c-section at 38 weeks because my numbers were at about 79 and my doctors were worried about my dd's count, but the day before my c/s my numbers had dropped to 58. They put me on prednisone for a week and induced me when my platelets got back to about 100 at 39 weeks.

I didn't have any issues during labor & delivery (and I was able to get an epi), and my daughter was born with a normal platelet level (we've checked her several times since, and she doesn't show any signs of having ITP). I continued with steroids and eventually weaned off of them, and my numbers continue to be around 100. I'm also like you - no real signs of it aside from random bruising on my arms/legs and the occassional cbc to check my levels. I know my case isn't as serious as some, but it was still a major ordeal to me with all I had to go through the weeks leading up to dd's birth. It was more emotionally tolling than anything. I think it's great that you are aware of this issue going into it so you know all of the issues/options ahead of time.

str8ota · March 2010

I have had ITP since I was 11 y/o. I also have APS which further complicates my pregnancies. When I lost Patrick at 17 weeks I was not able to get a epidural because my platelets dropped. And even though I lost Patrick they feel it was my APS that contributed to it and not my ITP though they do monitor that also. GL with everything and I hope when you do get pregnant it's uneventful

LittleDucky · March 2010

str8ota:
I have had ITP since I was 11 y/o. I also have APS which further complicates my pregnancies. When I lost Patrick at 17 weeks I was not able to get a epidural because my platelets dropped. And even though I lost Patrick they feel it was my APS that contributed to it and not my ITP though they do monitor that also. GL with everything and I hope when you do get pregnant it's uneventful

I am so sorry for your loss. Thank you for responding and sharing your story and for the good wishes. I am so sorry that you have to deal with both ITP and APS. I will send T&Ps your way for a nice, long, healthy pregnancy and healthy baby.

LittleDucky · March 2010

mandarod:
I never knew I had ITP until I was abot 35 weeks pg. My numbers weren't too bad - about 100 - at my 8 week appointment, so my OB didn't worry too much. When they started dipping lower around 35-36 weeks, she had me see a hematologist. I was scheduled for a c-section at 38 weeks because my numbers were at about 79 and my doctors were worried about my dd's count, but the day before my c/s my numbers had dropped to 58. They put me on prednisone for a week and induced me when my platelets got back to about 100 at 39 weeks.

I didn't have any issues during labor & delivery (and I was able to get an epi), and my daughter was born with a normal platelet level (we've checked her several times since, and she doesn't show any signs of having ITP). I continued with steroids and eventually weaned off of them, and my numbers continue to be around 100. I'm also like you - no real signs of it aside from random bruising on my arms/legs and the occassional cbc to check my levels. I know my case isn't as serious as some, but it was still a major ordeal to me with all I had to go through the weeks leading up to dd's birth. It was more emotionally tolling than anything. I think it's great that you are aware of this issue going into it so you know all of the issues/options ahead of time.

Thanks for replying! It must have been so scary to be diagnosed with ITP when you were pg with your daughter. I remember when I was being diagnosed and it was terrifying, especially before they ruled out leukemia. I do feel fortunate to at least know what is going on with my body now instead of having to be surprised by it later.

I am happy to know that you had a successful, healthy pregnancy in spite of your ITP and that you DD is healthy (and adorable, BTW!). It is great to know that good outcomes happen and to hear directly from someone who had a good outcome!

Did you have any bad side affects from prednisone? I have heard horror stories about that drug so that is one thing that makes me nervous.

danelle314 · March 2010

Justducky-

I was pleased to see your post. I am 25 years old, diagnosed with ITP at the age of 20. I am not pregnant, and never have been, but every time my husband and I discuss getting pregnant, obviously the low platelet count is an issue- (mine run anywhere from 40 to 123).

How long have you had ITP? I have thought about trying to get preggo this summer- but obviously I am a little unsure do to the low platelet count... (and I agree PDSA is not very helpful)!!

Look forward to hearing from you- maybe we can get thru this low platelet thing together

Oh, also- I tried prednisone a long time ago- was not a big fan of that medication... I dont ever want to go on it again! Have you ever had any treatments for your low counts??

Danelle

LittleDucky · March 2010

danelle314:
Justducky-

I was pleased to see your post. I am 25 years old, diagnosed with ITP at the age of 20. I am not pregnant, and never have been, but every time my husband and I discuss getting pregnant, obviously the low platelet count is an issue- (mine run anywhere from 40 to 123).

How long have you had ITP? I have thought about trying to get preggo this summer- but obviously I am a little unsure do to the low platelet count... (and I agree PDSA is not very helpful)!!

Look forward to hearing from you- maybe we can get thru this low platelet thing together

Oh, also- I tried prednisone a long time ago- was not a big fan of that medication... I dont ever want to go on it again! Have you ever had any treatments for your low counts??

Danelle

Hey there! Your counts look like they have been pretty good. I was diagnosed in August 2008 and I haven't had a count above 80 since. I've never been treated though. My hematologist doesn't see a need for treating at my counts when I have no symptoms.

When I asked both my hema and my ob/gyn about getting pg with ITP they both said that it was totally manageable and that I could have a normal pregnancy. It is from my own research that I found what the specific risks are. But they can be managed and the vast majority of the time ITP moms and their babies are just fine. Maybe the moms need to be watched more carefully and treated with prednisone or IVIG at some points during the pregnancy, but they end up ok.

How often do you have to have your counts checked? I had been going every 3 months but recently my hema said I only need to get them checked every 6 months, but that if I get pg then I need to come every month. It is good to know they will take good care of me though!

My DH and I are trying to get pg now so we'll see what happens if I end up pg. Good luck to you and your husband when you do decide to try to get pregnant!

danelle314 · March 2010

I get my counts check about every 6 months. My last count was 123 (highest they have ever been!!!) and before that they were like 73. Before that I was getting them checked every 2 or 3 months.

How were you dignosed? Were you having any bleeding symptoms? I have never had any major symptoms of ITP....

I guess the next thing I should probably do is find an OBGYN to talk to about this. My hematologist did tell me she thought I was safe to get pregnant, but I still have the basic concerns....

So I am thinking about possibly stopping my birth control in May...Will probably get my counts checked right after I stop my birth control... I guess if I get pregnant I will be considered high risk do to the low platelet count though?.....

mandarod · March 2010

Aww, thanks! I think she's pretty adorable, too!

I really didn't have any terrible side effects from prednisone, but I know I was lucky. I might have put on a few pounds, but I had just had a baby so it's not really like anyone could tell anyway!

To tell you the truth, I did NOT care for the hematologist I went to (she was referred in an "emergency" sort of way by my OB when I had to make an immediate appointment, so I just stuck with her). After dd was born, she ran all kinds of tests, including the bone marrow biopsy (ack!) and finally concluded that I have ITP. I went to a highly regarded hematologist for a second opinion and he told me he wouldn't have even put me on prednisone. I didn't really go into what he would have done, but I plan on seeing him if I have issues with any future pregnancies. I know that doesn't really apply to your question - but I guess I'm just suggesting that you get a second opinion if you have any doubts or concerns. I wish I would have, but at the time, I wasn't thinking clearly and was completely freaked out about everything.

Good luck to you!!

LittleDucky · March 2010

danelle314:
I get my counts check about every 6 months. My last count was 123 (highest they have ever been!!!) and before that they were like 73. Before that I was getting them checked every 2 or 3 months.

How were you dignosed? Were you having any bleeding symptoms? I have never had any major symptoms of ITP....

I guess the next thing I should probably do is find an OBGYN to talk to about this. My hematologist did tell me she thought I was safe to get pregnant, but I still have the basic concerns....

So I am thinking about possibly stopping my birth control in May...Will probably get my counts checked right after I stop my birth control... I guess if I get pregnant I will be considered high risk do to the low platelet count though?.....

I was diagnosed because I had a low platelet count on my CBC done for a standard physical. I'd brought up to my doctor before that I bruise easily and she had tested them before but they'd always been normal (although on the low side of normal). She referred me to a hematologist who tested my platelets a few times over several weeks, had me get an ultrasound of my spleen and did some more bloodwork to check for anti-platelet antibodies. He then diagnosed me with ITP. Thankfully he did not make me get a bone barrow biopsy!

I don't know if ITP ladies officially get the "high-risk" label. I don't think that we need to see maternal fetal medicine specialist as long as our ob/gyn and hematologist can communicate well to handle our condition. Not totally sure though. And with your count you should be fine as long as they stay so high, especially since the lowest they've ever been was in the 70s. Good luck!

LittleDucky · March 2010

mandarod:
Aww, thanks! I think she's pretty adorable, too!

I really didn't have any terrible side effects from prednisone, but I know I was lucky. I might have put on a few pounds, but I had just had a baby so it's not really like anyone could tell anyway!

To tell you the truth, I did NOT care for the hematologist I went to (she was referred in an "emergency" sort of way by my OB when I had to make an immediate appointment, so I just stuck with her). After dd was born, she ran all kinds of tests, including the bone marrow biopsy (ack!) and finally concluded that I have ITP. I went to a highly regarded hematologist for a second opinion and he told me he wouldn't have even put me on prednisone. I didn't really go into what he would have done, but I plan on seeing him if I have issues with any future pregnancies. I know that doesn't really apply to your question - but I guess I'm just suggesting that you get a second opinion if you have any doubts or concerns. I wish I would have, but at the time, I wasn't thinking clearly and was completely freaked out about everything.

Good luck to you!!

Yikes! I am so sorry you had to have a bone marrow biopsy. My hema did not think that was necessary for a diagnosis, and he doesn't generally treat unless counts are below 30 or symptomatic, or if there is some reason to. For example, he said that if i have to have major dental work or some kind of surgery done or something I should be treated for a week or two beforehand to get my counts up.

It's good that you found a hema you are more comfortable with - hopefully he will be better than your last one during any future pregnancies!

danelle314 · April 2010

Just ducky! Congrats on your news- I happened to see it on some of the other message boards! How exciting to have a holiday baby!

Please keep us updated on your pregnancy, baby, and also the platelets counts!! Im curious to see how it goes- ecspecially since I am thinking about April being my last month of birth control!!!

Again- congrats and best of wishes to you and your DH!!!

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