TOPIC:

Hi-
I have been on these boards for a while. After years of many treatments, I tried other naturopathic type treatments which helped get my counts to stay in remission in the 80's (long story).

Currently 23 weeks pregnant. Counts dipped at 14 weeks so I started treatment. I was given a small dose of IVIG once and have been on steroids since then.

This is my first baby. I just wanted to start a thread where we can encourage each other.

Hi mdgal,

I'm a bit behind you - only just 8 weeks - but it would be great to share the ups & downs with someone who "gets" pregnancy & itp

So far my count is in the 50's and I'm not on any treatment. I'm hoping to get to the second tri before I need anything.

How was your first tri? I feel well but have had some spotting. I suspect I may have a cervical polyp that is bleeding occasionally - I was taking clomid to conceive & so my hormones were all over the place. A polyp was spotted at a smear just before I fell pregnant. It's still worrying though.

This is my second baby. I didn't have itp with my first though so I think this will be a much harder pregnancy.

Have you found out the gender? Are you going to? I think we will - we didn't with Chloe but this time around I want to be organised & ready with clothes etc. if it's not a girl I can sell most of the clothes I've kept & buy boy clothes instead.

Hope you are feeling well at 23 weeks & enjoying the feeling of expecting your first

I am not currently pregnant but had my first baby in November my counts were anywhere from 2-50 my whole pregnancy without ivig they would dip to 2 or 5. I went three days a week for ivig 5 hours a day steroids don't work for me. You guys will get through it it is sometimes difficult but oh so worth it. hang in there ladies you got this

Hi Katsim
First trimester was ok. I started with a count of 84 and by the start of the second trimester I was down to the teens. Other than my platelets I've just had dizziness here and there

My nose gets really dry and bloody these days but my counts are in the low 30's. Doc is not too worried. I plan on having a vaginal birth if possible with no epidural

Hi Kelirae
Congrats!!!! How is the little one? Steroids are holding me up in the 30's so I'm hoping I may only get IVIG again closer to birth time. Did your platelets bounce back after delivery?

How was your delivery? Did they give you General anesthesia? My OB was saying I could end up having to give birth that way but if it's not medically necessary I don't want to go that route.

He is awesome worth every minute of my pregnancy he is amazing and I'm do in love I had him vaginally and I had a anesthesiologist put the epidural in at 60,000 platelets after checking my coagulation but I ended up having a placental abruption and lost 120cc of blood and my platelets dropped next day to 11 so I was stuck with a bakrhi balloon a catheter and the epidural stuck in my back for two days while the ivig was working got it all out at 30,000, they had no choice luckily it all ended up ok but wasn't fun lol. The anesthesiologist got in trouble for placing it but to be honest when those contractions started I felt like I was getting slowly tortured! But it is true you don't remember the pain after you see your baby. I was hoping for a remission but that's not the case I'm back on nplate.

Hello Everyone,

Im curentlly 14 weeks pregnant and my counts were fine in my first trimester. I now am in my second and they dropped down to 20 so my OB and Hemo decided on 2 bags of platelets and 3 days of ivig. My question to any of you is...did you have to continue the ivig through out the pregnancy or did it help keep them up? Just wondering what im in for, as far as treatment?

Thanks
Carly

Mdgal - I had my first vaginally with only gas & air and it was ok. I had complications though and had to go to theatre afterwards. This time id like an epidural if my counts will allow it.

Kelirae - the epidural you had sounds like hard work! Would you do it that way if you had to do it all again?

Carly - I didn't have itp with my first so I don't know about continued treatment in pregnancy. Personally I would not have bags of platelets with a count of 20, I'd let the ivig run it's course. I have had ivig before and the longest it lasted was three weeks before I needed it again. I hope you get a reasonable count that lasts a while from it. Make sure you drink plenty and stay hydrated whilst you have it too

My count seems to be rising in pregnancy - from 47 a few weeks ago to 105. I'm not convinced it will stay like that but I'm really pleased I don't need treatment just now!!

Carly:

IVIG usually needs to be repeated often. It normally only lasts a week or two.

I would do it that way in a heart beat I was having back contractions most painful thing I could ever imagine I threw up from the pain I would take that epidural again no questions asked lol

Hi Carly
Platelet infusions are not a standard treatment for ITP since our bodies will simply destroy them like they do to our own platelets.

IVIG is a quick fix and depending on the dose you take could last you about 3-4 weeks. I get better response with IVIG only in combination with oral steroids.

My first platelet issue during this pregnancy was treated with IVIG and steriods. I have just stayed on steriods since then. Prior to birth they plan to start giving me IVIG weeks before

Thank you ladies,
I forgot to mention I was already on 20mg of prednisone daily....but since they have dropped I got increased to 40mg...plus had the ivig infusions and they went back up too 87 but im guessing after a few weeks they will decrease once again....my problem is im hoping to not up the dose anymore I have read it can possibly cause birth defects....so im also guessing im not out of the dark....did any of your children after birth need platelets?

Carly
What count is your hematologist comfortable with? 10 mgs kept me in the 30-40's in my 4th month. Then I dipped to 9000 platelets. We went up to 20 mg. it's been keeping me between 25 and 35k platelets. I also don't bleed easily so that is the plan we are following.

I read a lot on the internet about steriods causing birth defects but they say its a possibility in the first trimester when baby's key organs are forming. Right now I just am trying not to spend time worrying since I have no control of the situation. My cervix too seems to be mildly weak so they have put me on bed rest this weekend .

I can feel my little one moving so that makes the tough days easier

MDgal
My hemo dosent like my counts below 20(usually because I bruise and bleed easily) they were 27 when he decided along with my OB to do infusions....then got referred out to a perinatal OB hoping soon to meet because I have a ton of questions....when I wasn't pregnant my 20mg would keep me anywhere from 500-70 so its been a few years since they have been this low. Plus I won't be surprised if they put me on bed rest just got nervous when my OB got so nervous he asked me what to do then called the next day to tell me he was referring me out to a specialist because he didnt feel comfortable.

I cant wait to start feeling baby move it might lessen my nerves a bit.

How is everyone doing??

I'm 12 weeks now. I have a scan booked for tomorrow morning & I'm excited but also very nervous. I hope it's all ok.

My platelet count is down from 105 to 67 but I'm still happy with that. & I meet my high risk ob on Wednesday. I was referred after a midwife called to "calmly" let me know that my platelets were "only" 67. Imagine her surprise when I was really pleased with that lol!

Has anyone else felt ill in pregnancy? I haven't had so much as a sniffle since my itp diagnosis. But, since falling pregnant I've had three colds, one bout of flu, multiple cold sores and a small cut on my finger went red & a bit infected. I'm not complaining - would rather be ill with slightly better counts, but is anyone else having this??

Hi Katsim -
Your counts are great. I've not had any colds throughout my pregnancy. I'm almpst 7 months now. My platelets have been hanging lately between 12K-15K. My doc doesn't want me to increase my prednisone dose anymore but to watch out for any bleeding that doesn't stop. So far I've had gum bleeds but they stopped not too long from when they started.

Some days are tougher than others but I'm hanging in there, keeping my faith going and looking forward to see my sweet little pea.

Katsim wrote:

How is everyone doing??

I'm 12 weeks now. I have a scan booked for tomorrow morning & I'm excited but also very nervous. I hope it's all ok.

My platelet count is down from 105 to 67 but I'm still happy with that. & I meet my high risk ob on Wednesday. I was referred after a midwife called to "calmly" let me know that my platelets were "only" 67. Imagine her surprise when I was really pleased with that lol!

Has anyone else felt ill in pregnancy? I haven't had so much as a sniffle since my itp diagnosis. But, since falling pregnant I've had three colds, one bout of flu, multiple cold sores and a small cut on my finger went red & a bit infected. I'm not complaining - would rather be ill with slightly better counts, but is anyone else having this??

Time for IVIG again. My platelets have been hanging out between 12 and 16 for the past month and doc thinks it's time for an intervention. I take another round this weekend. I'm always worried when I take these infusions but I know it's for the best. Praying my little one will tolerate it well.

Mdgal - hope your ivig goes well. What kind of counts do you hope for? And how long do you hope it will last for? I can't wait to get to 29 weeks and beyond. I remember third tri being uncomfortable last time around but it's so nice to be able to see the finish line!!

Hi Katsim
They are going to give me a very small dose. It will probably get me to the 80's like it did the last time.

I suspect it will only last 2 weeks but hoping for 3

I used to have quarter doses & hit similar numbers for a similar period of time. Could go in & out in about 5 hours - much better than doses over a couple of days. At least it will be quick!! Will they keep doing that until delivery now?

I suspect they will. I am also hoping to carry my sweet pea till 40 weeks but they told me after week 37 depending on how well I keep responding to the IVIG they might induce me at 38 or 39 weeks.

37-42 weeks are considered full term so I can understand why they might think like that. If your counts fluctuate they will have control over inducing you when they are high - rather than hoping they're high when you naturally go into labour.

I'm trying to keep a really open mind about giving birth. I'm hoping for an epidural following a natural start to contractions. BUT if I'm told I can only have an epidural if they induce me when my counts are good - I'll take that!! Do you have a birth plan? Or any thoughts about what you'd like?

MDgal,

Im now 18 weeks and just had a treatment last week for the second time since being pregnant. My count the first time after treatment went up to 202k and it lasted me about 4 Weeks, then last week i had treatment and my count only went up to 123k so im hoping it last about the same as last time. My bleeding has mostly been just my gums when i brush, but its so bad its almost like im brushing with blood instead of toothpaste. Ive been getting really bad headaches after the treatments for a couple days but really nothing to bad. How low are your counts getting before they decide to do treatments? They wont let me get below 30k and then i do treatment, plus they always up my dosage and then lower as the weeks go on which really dosent make a difference, just want to get an idea of what you ladies are going through with this.

Carly

My counts have been ok so far Carly. 97 at last count. They are fluctuating wildly though - between 50-100. Literally up & down like a yo-yo with symptoms when it drops. Green bruises, bleeding teeth, nose bleeds and cervical bleeds. I have talked to my haemo & he won't let me go untreated below counts of 30 in pregnancy. The plan at the moment is to start on 30mg pred and see if it works. I don't think it will but that's the first line. Then it would be ivig.

I hope your count stays good for another couple of weeks

Hi Katsim

My birth plan is to go all natural with no meds. I don't want an epidural either. That is my plan but I will let the docs do what they have to do if things change

Katsim wrote:

37-42 weeks are considered full term so I can understand why they might think like that. If your counts fluctuate they will have control over inducing you when they are high - rather than hoping they're high when you naturally go into labour.

I'm trying to keep a really open mind about giving birth. I'm hoping for an epidural following a natural start to contractions. BUT if I'm told I can only have an epidural if they induce me when my counts are good - I'll take that!! Do you have a birth plan? Or any thoughts about what you'd like?

Carly
My doc treats when I am in single digits or have bleeding if a higher count. I am on prednisone but its not doing much now, just keeping me in the teens. My gums have been bleeding quite a bit this week with a count of 12 so thats why I am getting the IVIG.

Mdgal - how did the ivig go?

Carly - how are you doing?

Hope you're both well with good counts

My count was 97 at last check. All good for now. I'm being monitored every 2 weeks just to check I don't drop quickly. All my drs are pretty surprised my count has gone up rather than down.

Are either of you finding out the sex of your baby? I think we're staying team yellow until the birth.

Katsim-

Im doing good....platelets staying steady but drop weekly....havent had to get ivig since the 16th of January....meeting a new hemo Thursday at Oklahoma University Medical since my normal hemo recommeneded I go there while pregnant. So off on a new venture....hoping I dont need treatment quite as often but who knows!
Thanks for checking on me!
Carly

Hi Katsim
Thanks for checking in. I have to repeat the IVIG at a higher dose. The last dose was so small and didn't work. In the third trimester even for healthy moms without ITP it is common for platelets to drop so for us it gets more dramatic. My platelets are more dramatic this trimester

My sweet pea is doing great and moving around a lot. The kicks and movements make it so worth it

Hi mdgal & Carly,

How are you both doing?? I know I'm still in earlier stages than the two of you (18 weeks now) - when are you both due? Mdgal - I'm sure it can't be too much longer for you??

Hope you're both well - how are the treatments going? Any updates?

I'm still not on treatment, but have had some bruising & bleeding symptoms the last 7-10 days so will get a blood count & see what that looks like. I imagine they'll start me on steroids if I've dropped below 30 - although they didn't work all that well when I wasn't pregnant so we'll wait & see