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Pregnant with low platelets and concerned.

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11 years 3 months ago #29914 by tuty
Hello Everyone, I was diagnosed with ITP 4 years ago(2 months after having my 3rd child.) I was given prednisone which had no effect on me whatsoever I was on it for 6 months. Then IVIG then finally Rituxan. Rituxan was the only drug that brought up my platelets from levels ranging from 3 to 15 to 100+. Now, 4 years later here i am haven't had any treatment after the Rituxan, levels have decreased but at a steady range within 20-40. I am currently 7 weeks pregnant, I made an appointment to see my OBGYN. He is asking me to see a Perinatologist, I have had 2 ultrasound thus far. He is very concerned about my condition, my platelet count is currently 27 and he is talking about meds. I had a very negative experience while on prednisone and i really don't want to go back on it. I am so terrified of experiencing the madness that i encountered while on this med that i am willing to fake taking it if i am told that i have too. I know it sound irresponsible but i feel that some doctors try to push meds the first chance they get. I understand if my counts were 15 or below then yes i would hesistantly do it but this is a norm for me and i don't think anything will happen. If i were close to giving birth then yes i would agree but i feel to start this now is just excessive. I will never get off of it and it would not work, and i feel that even if it did work then will i be on it for the remainder 8 months that i have to go? This medication makes me crazy. Please if you have any advice or can say how your pregnancy experience went with very low platelets, i will greatly appreciate.
Thanks,

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11 years 3 months ago #29965 by monesue
Replied by monesue on topic Pregnant with low platelets and concerned.
Hi tuty, I feel your pain! I hate steriods they make me crazy too. The thought of being pregnant and on steriods is my idea of hell. Both pregnancies I refused steriod treatment- the first time because I wasn't sure about the effects of steriods on a baby. I know what they do to me and long term effects and I'm not convinced that they wouldn't harm the baby now or in later years but I'm not a doctor so it was maybe a hormonal overreaction based on my hatred of them. My doc agreed to ivig which I had 3/4 days a week fortnightly from week 16 the first pregnancy and week 12 second time round. Not sure if it started sooner because it was second time round or because it was twins. both pregnancy resulted in my babies being born early. My eldest at 34 weeks via planned c section because I stopped responding to treatment and week 33 for the twins via emergency section (my daughter was eager to make her grand entrance!) who knows if I did the right thing with the treatment I opted for. My kids were all in neonatal unit for best part of 2 weeks but were all really good weights 6lbs and 4 1/2 pounds. Considering how early this was pretty good and they are all healthy chubby babies!
You have to decide on the best treatment option for you and your baby. I'm sitting with my count at 4 just now and back on the steriods. 10 is my limit before I get treatment for myself. The problem is when you're pregnant you have to change the boundaries and be more cautious. My limit was 20 when I was pregnant with the twins and then I went for treatment.
Another option may be to take a small dose of steriods throughout pregnancy and try to maintain your count between 30-50 this means less side effects and less chance of effects on baby. My best advise though is to find a doctor who is willing to listen to you and discuss all your options until you find a treatment that you are comfortable with. Hope this helps. Lots of luck and congratulations on your pregnancy xxx

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11 years 3 months ago #29991 by tuty
Thanks for your response... i actually went to get my platelets checked again and they were at 47. Unheard of count for me without treatment. The doctor said we will watch and see and if it gets low then we will have to treat it. I am ok if he wants to treat at 20 but anything above i think might not be necessary. I sit on the 20 on the regular so this is normal for me and i don't get any symptoms except some easy bruising here and there.

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10 years 8 months ago #34674 by tuty
Hi Everyone, It's been 6 lonnng months since i last posted on here. I am still pregnant (35 weeks). My platelets have been steady in the 30's haven't had any treatment to date. Regular OB visits a few high risk and Hemo doc appts. but everything seems to be ok. I have been scheduled for IVIG at the end of the month (July) then get induced 7-10 days after at 39 weeks.
Hoping the baby doesn't have low platelet and that my platelets don't go lower than 30 after the IVIG... Has anyone been steady with there platelets and then they gone really low after treatment? Kinda nervous about the whole thing... the doctor said if IVIG doesn't work then i might have to get a transfusion if there are any issues.

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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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10 years 8 months ago #34769 by Sandi
Replied by Sandi on topic Pregnant with low platelets and concerned.
Have you ever had IVIG before? It would have been a good idea to have it prior to the time of delivery to see if it works. I doubt your counts would go lower, but they might not go any higher. Have they mentioned steroids? A low dose for a few weeks might help.

Good luck! I hope all goes well. You're almost there!
The following user(s) said Thank You: tuty

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10 years 8 months ago #35490 by tuty
Hi everyone,
I had ivig 5 years ago. 2weeks I was given it againvto increase my platelets for delivery. My platelets went up from 35 to 122. I gave birth to my son on aug 7. The day before I was ready to come home they told me that the baby's platelets were 35. He was admitted to the nicu. So far his platelets have gone down to 19 and have not gone up he has had 2 ivig infusions and a platelet transfusion.. I am so scare as they said he has blood in urine. I want him to come so bad. Is he going to be alright, why has his platelet not gone up not even a lil? What will happen if they don't ? If anyone can help me please? I am so desperate and scared!

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10 years 8 months ago #35495 by Ann
Congratulations on the birth of your son. It is common for the baby to have a low count with a mother with ITP. When his body clears the antibodies his count will come up. Don't worry. It just takes time. Once his count starts going up it will carry on up but be patient just now. Let us know when his count starts to rise.

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