pregnancy

Hello everyone! does anyone have any information about having low platelet counts during pregnancy? I want to get pregnant but with counts of around 25 all the doctors advise me not to go there. Just wondered if anyone out there had any experience in this area. Any stories I have read so far involve women with itp but with higher platelet counts than 25 during pregnancy. I would appreciate any information on this topic. Thanks a mill x
ps. I am keen to meet people in a similar situation as me!

Red:

Are you able to treat to get your counts up?

There are women who had low counts during their entire pregnancy, but they haven't posted in a long time.

sandi thanks for your message! i hope i get to talk to some of these ladies who have had very low platelets during pregnancy. yes, ivig works a little for me but steroids dont and high doses of them has left me with bone pain and about 10 more lbs of fat lol. unfortunately i miscarried at 23 weeks due to itp complications.my haemo wants try rituximab and romiplostin on me but said i should not try get preg while on them so i dont know what to do! i dont have kids and i am desperate to start a family. there is no way my haemo will give me the go ahead to get preg, especially after miscarrying. they said to wait n try these other drugs but i dont wanna try them i just wanna get preg! feeling very frustrated with my itp right now. i want to delay trying these other drugs n just get preg but my doc wont agree and thinks i should try the other drugs first! aghhhhhh lols

Yeah, that's a problem. You can use Rituxan, but you shouldn't get pregnant for one year after using it. That is usually about the time that Rituxan begins to "wear off". Some people have had longer remissions though.

What does your OB-GYN think?

I am somewhat in the same boat as you. If your doc is insisting that you "not go there", if I were you, I would seriously look into getting a new doc. If left untreated, I go all the way back down to zero platelets essentially. However, I have never had a hema tell me that pregnancy was not an option for me. I currently use WinRho to get my platelets up (although all signs are looking like that's not working very well for me anymore), but I have used IVIG in the past and know that that works too. Although IVIG is inconvenient, my doc has told me it is safe for pregnancy and that would be the plan for me should I decide to start a family, which I am soon.

Also, get yourself a high risk OBGYN, if you don't already have one!

I have been trying really hard over the last five years to live by the motto:

I have ITP. ITP doesn't have me.

Good luck!

I like that......I have ITP, ITP doesn't have me!!!! thanks for that!!

thanks sandi and elizabeth! did either of u get checked for h pylori? its a stomach bacteria.some studies suggest a link between it and itp! i just found out that i have it on friday. am on antibiotics for it now. some people get a rise in platelet counts when the h pylori is eradicated! they can check if u have it with something called a breath test. its a really simple test where u take a drink and breathe into a tube and then they test the tube to see if u have h pylori. i read one story online about a woman who's platelets were 1. she found out she had h pylori and was treated for it. it didnt improve her itp, but then she had another round of ivig which had previously not worked for her and after that her itp went into remission and have stayed that way!she thinks it was because her h pylori was eradicated but her body just took a while to adjust and then the ivig gave it the final push. your doctor might not automatically test u for h pylori. mine didnt. i asked to be tested for it. i will let you all know if my platelet count gets any higher! fingers and toes crossed! so.. look into this h pylori thing....might be worth it!

I'm getting treated for H. pylori. I;m keeping my fingers crossed too!

Hi- just as an FYI - my count was apx. 112k when i got pregnant (that's how i found out I had ITP). It went down to 0, yes zero. I never knew much about ITP and didn't let it hinder me, worked every day and only took off work when i was giving birth (12 days in hsp) had a c-sect and everything turned out..

my computer is on the blink so i wud give more details more later if needed

Yes, I was tested years ago....negative. Good luck to you.

redchilli - the new international guidelines (found in one of the first folders of the forum) mentions use of azathioprine or combination therapies during pregnancy if steroids or IVIg alone don't help. Don't give up!

wendy, do you think your count went down to zero because you were pregnant? thanks for the info!

Hello I'm really pleased for you that you may have found an answer to your ITP (re.H.pylori) - how did it go?

I'm just posting this on here because you said you were interested hearing from anyone who has experiences along the line of low counts and pregnancy.. or in a similar situation to you..

I've just got back from an appointment with an top Gynae specialist in UK who gave us tonnes of information re. this! 1.5 hours of non-stop info..
In short the essence of what he said was;

He says I do have PCOS (Polycystic Ovary Syndrome)which was a shock, but that shouldn't stop me getting preggers as there are extremely effective medical ways to treat our infertility, which are a bit complicated and so I won't mention them here.

However, what he did say which was a huge shock was that it was an extremely high risk to my life to get pregnant and give birth. He is very worried that they wouldn't be able to control my bleeding in a normal labour and even worse a c-section. Even with platelet transfusions and steriods and everything possible.

He said we should think VERY carefully about whether we want to take this risk!

I'm in a situation where I desperately want a baby (we have been trying for 7 years now..and I am child crazy ) but of course from my side of things I feel that I have to think about my husband who could potentially be left with a baby and no wife. The thought of me bleeding to death scares him so much. He has seen me in awful situations with bleeding many times during our 7yr marriage.. poor chap.

My platlets untreated are 11-22,000 and I normally run at a count of 16,000. Have done for 31 years. I have big problems with heavy periods but these have been controlled lately with Tranexamic Acid. I have tried pretty much all treatments for ITP.

Is there anyone with advice - particularly anyone who has got pregnant or thought about pregnancy with counts in this region...? I do respond to steriods and IVIG, although get quite bad side effects.

I love children - have grown up as the eldest of 16 kids and have always worked with children as a paediatric nurse (until I had to give up due to ITP 3 years ago). I know that I may have to accept that my ITP is too bad to carry a pregnancy and give birth safely, but before we have to make the decision to actively prevent me from getting pregnant, I would love to hear from anyone in the same boat!
I feel like my heart is breaking at the thought of never having our own baby...

Thanks gals

Gill

ps. Let me know if you want to get in touch seeing as we both have similar issues with low counts and really wanting to get pregnant - I would love to hear from you!

I was diagnosed with ITP during my first pregnancy 15 years ago. I was on prednisone the whole pregnancy. Saw haemo weekly and OB bi-weekly to check counts and make sure baby was doing ok. I was able to deliver vaginally because my OB scheduled an induction and I was in Milwaukee at a hospital that specializes in high risk pregnancies.
My daughter is 14 and will graduate 8th grade next week!

My second pregnancy was drastically different. I became pregnant in 2007, had 1st blood draw and platelets were 14. My platelets never reached higher than about 100. They treated me with prednisone until it wasn't doing anything for me. Then I was doing IVIG, every 2 weeks to equal 4 doses which didn't move my platelets along. Then haemo tried Win-Rho, didn't help either. So there I was about 5 months pregnant and nothing was working! I went to see my OB for an ultrasound and checkup. She wanted to know where my platelets were, so she sent me down to the hospitals lab for a CBC. When I came back up and I was waiting in the room for her my arm was bleeding like crazy from where they took blood. She got the report that the lab couldn't even count my platelets and had me rushed to the hospital and immediately checked in. I was to be on strict bedrest until the OB and haemo got together and formed a plan which was: stay in the hospital for rest of pregnancy (which would have been about 4 more months) or emergency splenectomy.
I thought it over, talked with my husband and my family, and ended up having the splenectomy. They did it open so the baby wouldn't be put under too much stress. The operating room was full of doctors. There was an OB monitoring the baby by those bands on my tummy. Whole operation took about 45 min. Spleen was normal size, and they gave me platelets while I was out just in case.
Was on prednisone rest of pregnany, and had to be induced at 37 weeks, but I now have a wonderful 2yr old baby boy!

Sorry was so long, but that was my experience. I hope it doesn't frighten you or scare you off from becoming pregnant. I hope that when you become pregnant it is easy and uncomplicated!