ITP and pregnancy

Hello,
Hoping to get some reassurance and information as well as others with experience in my situation!

I was found to have a low platelet count at about the age of 18. My primary physician followed it every 6 months for a couple years, and I always ranged from 105-120K. I never had any symptoms. A few years ago, I had a count of 95K and my PCP recommended I see a hematologist to look further into things. The hematologist did testing and after ruling out other causes, said I most likely have ITP. He also mentioned that this could simply be my "normal" and I'll never have issues. He wasn't concerned. However, because my counts were only mildly low and I had no symptoms, he had no further recommendations. He actually switched me to just a yearly platelet check unless any symptoms popped up.

Flash forward to now, I'm 28 years-old and pregnant with my first baby. During my first visit with my OB, my platelets were 111K. She requested I follow more closely with the hematologist. Over my pregnancy, my platelets have slowly dropped. Most recently I went from a count of 82K to 65K. I am currently 32 weeks, and had my last blood test last week. I still have no bleeding symptoms.

I am afraid. I'm nervous that counts will continue to drop. I will have another test next week, and am scheduled to have a course of IVIG at 36 weeks if they go below 50. I have already come to terms with the fact that it is unlikely I can have an epidural, and the thought of a C-section under general anesthesia has me losing sleep.

This is my story, the only specific questions I have are: Will my platelets likely go up to my "normal" after delivery; Anyone have a baby with low platelets/how was this monitored? Also looking for reassurance, others experiences. Thank you!

ADDENDUM: I wanted to add... I feel great, exactly how I would imagine a healthy pregnancy feels. Also, when I was initially "probably diagnosed" with ITP, I didn't look much into it, Dr. wasn't concerned/I wasn't concerned. Just starting my learning about this disease!

Nels:
We have a pregnancy section that you can read through. I'll try to answer your questions though.

Chances are good that your counts will return to your normal following delivery or breastfeeding. It usually happens once the hormones calm down. Sometimes though, counts do not return to normal. If that happens, there are many ways to treat ITP and you will manage it. You'll be okay.

Sometimes babies are born with low platelets but usually return to normal within a few days or weeks, with or without treatment. This seems to occur more often in women who have more severe ITP. I have never seen a bad outcome here and I've been here since 1998. Babies are monitored with a CBC and only treated if necessary, usually IVIG. That is rare.

Try not to lose sleep over the delivery. Most women with ITP have vaginal deliveries and do not need a C-Section because of ITP. As for the epidural, I can only tell you my story. I did not have ITP then, but had two deliveries with no medication. The thought of an epidural scared me, so I did it naturally. One was hard....a 23 hour labor with Pitocin. It was my choice and as hard as it was, I chose to do the next one the same way. You get through it. If you have IVIG, you'll more than likely be able to get the epidural. You only need 100k for that. The worst case I ever remember here was a woman who was having twins. Her counts were below 10k and they couldn't get them up, even with a splenectomy during pregnancy. She ended up delivering two very healthy babies and did just fine.

Feeling good matters! Your doctors will get you through this!

Thank you so much for your response. I feel kind of lost and alone as I do not know anyone in a similar situation, so reading these discussions have provided a lot of reassurance. I feel that I should have been more prepared for this prior to getting pregnant, but it was honestly something I never thought about! So many people here are so in tune to their health and the different treatments, I'm just trying to find my way.

I'm hoping that I won't need treatment at all, I'd rather just pass on the epidural rather than do unnecessary interventions, all of which of have side effects. Considering I've never been on treatment, there's just no way to know what side effects I''ll have, which is scary.

It's so good to know that you mostly see good outcomes here. Through my research and looking at discussions here, I'm clearly not yet in the danger zone, especially considering that I have no symptoms. I'm going to try to take this one day at a time and focus on my health and the health of my little family as well as trust in the experts I have monitoring me.

Thanks again

Eh, don't beat yourself up about not being prepared. There really wasn't anything you could have or should have done before this. You're almost at the end and you're being monitored; that's all you need right now. If you do end up needing treatment, we can help you with that!

Wanted to update in case there is anymore insight someone can provide

Two weeks ago, I receive a treatment of IVIG at the encouragement of my hematologist and OB. My platelets were 62K the day before the treatment. Unfortunately, it didn't work. Platelets were 58K this week. I was started on 10 mg of prednisone on Thursday and will be on it at least until they recheck me on Wednesday. Dr. said that there are many ways to dose out the steroids, but this is what he is most comfortable with to start. They aren't overly concerned, but want to find something that works in the case that they continue to drop. I am currently 37 weeks pregnant, so technically could go into labor at anytime.

So a couple questions: Is it unusual for the IVIG not to work? Are steroids more likely to work? Is this similar to the dosages of prednisone you have seen for other people? As I said above, I am willing to go with no treatments and go without the epidural/risk the c-section if my platelet levels are safe. I'm wondering if I should advocate for this if they don't continue to drop and the steroids don't work at the current dose. I know the side effects increase with the dosages. I also can't find any information on if there will be withdrawal symptoms for the new baby after delivery if I continue the steroids until then.

I just want a safe delivery and healthy baby! Would love to know if you've heard of other experiences.

Thanks!

Nels:

It's odd for IVIG to not work but it happens. The problem with IVIG is that it doesn't last long...the average is a week or two.

The Prednisone dose is very low. Most people start with 60 mg's to 100 mg's. If you are a steroid responder, that dose could get your counts to a higher range. You'll find out at your next CBC. It's fine to start with a low dose because if you do get a response, the side effects won't be too bad and you'll have a much easier taper. Even if they have to bump you to 20 mg's, that's still not too bad. The baby should be fine with that dose. Good luck and let me know how it goes!

nels5752 wrote: Wanted to update in case there is anymore insight someone can provide

Two weeks ago, I receive a treatment of IVIG at the encouragement of my hematologist and OB. My platelets were 62K the day before the treatment. Unfortunately, it didn't work. Platelets were 58K this week. I was started on 10 mg of prednisone on Thursday and will be on it at least until they recheck me on Wednesday. Dr. said that there are many ways to dose out the steroids, but this is what he is most comfortable with to start. They aren't overly concerned, but want to find something that works in the case that they continue to drop. I am currently 37 weeks pregnant, so technically could go into labor at anytime.

So a couple questions: Is it unusual for the IVIG not to work? Are steroids more likely to work? Is this similar to the dosages of prednisone you have seen for other people? As I said above, I am willing to go with no treatments and go without the epidural/risk the c-section if my platelet levels are safe. I'm wondering if I should advocate for this if they don't continue to drop and the steroids don't work at the current dose. I know the side effects increase with the dosages. I also can't find any information on if there will be withdrawal symptoms for the new baby after delivery if I continue the steroids until then.

I just want a safe delivery and healthy baby! Would love to know if you've heard of other experiences.

Thanks!

Hi Nels,
Congratulations on making it to 37 weeks, you are in the home stretch now! I'll just pipe in with my experiences (which should make you feel better!) of having 3 ITP babies. All three of my pregnancies resulted in progressively decreasing counts. The goal for me was always to try to get the counts up to 50K, which ended up requiring herculean quantities of steroids in the third trimester. I recall being on 80mg Prednisone towards the end of one of my pregnancies and them having trouble getting my counts much above 30. Your counts are fabulous for being in the final stages, and it sounds like they are holding well.

I had all 3 of my boys all naturally -- no epidural, and luckily no c-sections required, even for my third son who was posterior and 10 pounds! Probably part of the reason that he was my third and last :lol:

I think the experience of laboring without extra drugs was great, not because it felt wonderful, of course, but I think there is something to the idea that if you are feeling what you are supposed to feel, pain and pressure-wise, then you can push like your life depends on it when the time comes. That's the only way I can explain successfully getting out my posterior and huge baby! Additionally, after the delivery is over the endorphins make everything afterwards so much easier. I took absolutely no pain medication after any of the births because the hard part was over and I could feel it.

All three of my babies ended up in the NICU because my anti-platelet antibodies crossed the placenta and they were born with low platelets. Luckily I was up and around and did plenty of walking because I had to keep heading over to the NICU to be there. I hope that your baby doesn't have that complication, but it's something to keep in mind with ITP. Regarding the effects of the steroids, I certainly don't know what may have happened in an overall biochemical sense (perhaps they contributed to the size of my third child), but all the boys were healthy and haven't had any long term effects that I know of. And I was on 80mg, so I think your 10mg is perfectly reasonable! After about 3-4 weeks, all three of the babies worked my antibodies out of their systems, and we got to stop with our weekly follow-ups with the pediatric hematologist. None of them have ended up with ITP, and they are now 15, 13, and 11 and very healthy.

Good luck and update us with your delivery story when it happens. I hope all goes well!

Thank you both for your responses! The fear of unknown is certainly the hardest part of all of this. Hearing others experiences has been so helpful for me.

I will make sure to update after the birth of our little boy, any day now

Yes, let us know! Since you haven't had seriously low counts, that should be a good sign. I've never seen any delivery disasters....they all end up well. We've had at least two women who had to deliver with very low counts because nothing worked to get counts up. One of them had twins. Both mothers were fine and so were the babies.

Wanted to update you both on the outcome of my pregnancy. I appreciate your responses and kindness so much, and hope I can provide the same reassurance eventually

I was induced at 39 weeks, 5 days when my counts were at 50K. They had been consistently dropping, so they wanted that baby out before they dropped further. Since I was full-term, I was comfortable with the plan and was all ready for my med-free delivery (are you ever truly ready?!) The evening of the induction, my counts were 122K (the best they have been since I have been diagnosed 10 years ago!) No one believed the number, so they were rechecked and were at 124K. I was able to get an epidural and delivered an 8 pound baby boy vaginally without complications. His platelets were normal. The morning after delivery, platelets were at 60K. I have since returned to my baseline (even while breastfeeding) and even had one very exciting "normal" level of 151K.

Again, thank you! Hearing the experiences of others helped me so much. While I'd never expect to have such luck with my counts next time, I feel so much more prepared in navigating the unknowns and unpredictability of this disease!

Congratulations, Nels! What a fantastic outcome! Thanks for letting us know....have fun with that baby!

Awww.. what a beautiful birth story! So wonderful how your counts went up just in the nick of time. That is really something. Best wishes to you and your lovely new baby!

Just saw your birth story and had to say congratulations!

Fabulous count for delivery and wonderful that your baby didn't end up in the NICU with any problems with antibodies crossing the placenta (all of my babies ended up in NICU jail because of my ITP, and that is no fun!).

Enjoy your little one and come back and update us periodically with how you are doing. It's nice to see good news!