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Quick update

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13 years 2 months ago #12966 by cloyd915
Quick update was created by cloyd915
Just got home from my 1st IVIg infusion. I don't seem to be having any side affects. I am scheduled for a home visit and a 2nd infusion tomorrow then off to the OB on Friday. I am still tapering off the Prednisone and am down to 60mg a day. Yesterday my platelets were at 3000. I will be 7 months Monday!!

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13054 by tigereyes
Replied by tigereyes on topic Re: Quick update
Yeah! Im hoping you respond to IVIG.

I will be 35 weeks tomorrow. Just had my appt and my counts went up to 55! Highest Ive been in well a long time without treatment. I can offically deliver without treatment B) Offically starting weekly appt next week and just had a fetal growth. My little boy is a heafty 6lbs even. Seems I will be induced at 38 weeks. IVIG scheduled for 3/14.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13059 by rainlyn
Replied by rainlyn on topic Re: Quick update
hey tigereyes,you mean youre pregnant??and you only have 55 platelet count?

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13 years 2 months ago #13064 by cloyd915
Replied by cloyd915 on topic Re: Quick update
I had IVIg infusions Wednesday and Thursday this week and an OB appointment yesterday. My platelet count was 65!!! I am pretty excited about that since my counts have been less than 5...I am being referred to high risk OB for the rest of my prenatal care and for delivery (via c/s). Saw the little guy sleeping for an ultrasound too. He looks great and is measuring 2 weeks ahead. I continue to ween from the Prednisone but my glucose test was normal (I was afraid it would be elevated from the steroids) and I have gained a total of 17 lbs :) It was a good appointment! Back to hematology Tuesday.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13065 by cloyd915
Replied by cloyd915 on topic Re: Quick update

tigereyes wrote: Yeah! Im hoping you respond to IVIG.

I will be 35 weeks tomorrow. Just had my appt and my counts went up to 55! Highest Ive been in well a long time without treatment. I can offically deliver without treatment B) Offically starting weekly appt next week and just had a fetal growth. My little boy is a heafty 6lbs even. Seems I will be induced at 38 weeks. IVIG scheduled for 3/14.



Tigereyes!! Great news! Any idea whats keeping your counts up? OMG 3 weeks to go!!! Are you ready??

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13083 by tigereyes
Replied by tigereyes on topic Re: Quick update
Im not sure. I just went in for weekly blood draw and my counts were up.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13094 by cloyd915
Replied by cloyd915 on topic Re: Quick update
whatever it is... I hope it keeps up for you :) I bet you are getting excited to finally meet your little man!

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13095 by
Replied by on topic Re: Quick update
Curious why they are inducing you so early if you're doing fine. Also, they did tell you that ultrasounds are more often then not off by a pound or more plus or minus didn't they? Your little guy is very little and you might want to consider letting him grow until he's done cookin'. ;-) Just something to think about. Congrats and hoping a safe, quick delivery for you!

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13 years 2 months ago #13121 by tigereyes
Replied by tigereyes on topic Re: Quick update
They are inducing at 38 weeks. That is considered full term. My doctors dont want to risk me going into labor and not having my counts high enough to handle the delivery. I know I can safely have a vaginal birth with counts at 50, but if something goes wrong and they need to do an emergency c section I would have to go under general anastesia. That is not something I want to risk. Id rather do the IVIG and have them induce me. My OB believes I will be ready to deliver at 38 weeks as I am getting more and more contractions and they are becoming more regular. He belives I will go early because of all this. I want him to cook as long as possible but according to the neonatiologist he will be ready at 38 weeks and they want to make sure my body can handle the delivery. All precautions are being taken.

Rainlyn...yes I got pregnant with a count of 30 and they have hovered between 30-40 dropping when I got the flu but went back up on their own. My pregnancy so far has been very routine. Other then the extra monitoring and forgoing a few procedures like a biopsy (my pap came back abnormal) and an amnio (with counts under 50 it can cause spotanious abortion of a pregnancy) I have had a very normal pregnancy. Baby is developing well and according to all my fetal growth right on targert. I asked the neonatiologist and he said it was very unlikely my baby will have low platelets. But they will monitor him and me after delivery. We are getting close about 3 weeks now.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13122 by tigereyes
Replied by tigereyes on topic Re: Quick update
Thats awsome your counts are going up. It could be the steriods making you measure ahead. Your having a boy too?? I see a high risk too, hes great and I do everything else that the regular OBs do just a few extra tests and appts.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13199 by cloyd915
Replied by cloyd915 on topic Re: Quick update
Saw hematologist today and my counts were 149,000!! Such a relief! I am going to continue to taper off the Pregnisone and keep with my weekly blood tests and she will be watching for any drop and ready with IVIg :)

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13206 by tigereyes
Replied by tigereyes on topic Re: Quick update
Oh Im so happy for you. Isnt IVIG the greatest...long inffusion. I hope you get a few weeks out of it. Keep us updated.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
The following user(s) said Thank You: cloyd915

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13 years 2 months ago #13364 by cloyd915
Replied by cloyd915 on topic Re: Quick update
Ok here it is!!! 149,000 on 3/8 at hematologist appointment following IVIG on March 2nd and 3rd...today I am down to 69,000. Is that fast or what?? I figured the IVIG would last a bit longer... I've dropped 80,000 in less than 1 week. Boooo

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13365 by tigereyes
Replied by tigereyes on topic Re: Quick update
BOO...IM right there with you. I had IVIG on friday and went up to 92. Are you tapering off prednisone? If you are a slower taper may help your counts stay up longer. I hope you can get back up.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago - 13 years 2 months ago #13390 by cloyd915
Replied by cloyd915 on topic Re: Quick update
Jen I started Prednisone at 80 mg and taper down 10 mg a week. I am currently taking 40 mg a day. I spoke to my hematologists nurse this AM she says they will order me more IVIg this week. The say the Predisone is doing NOTHING for me but ya can't just quit it ya know...especially being pregnant. I HATE the stuff too...be glad when I'm off it. Seems silly to be taking meds that are doing nothing and make you feel lousy. Ugh.

What numbers are you and your doctors looking at for delivery?

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13475 by tigereyes
Replied by tigereyes on topic Re: Quick update
I want to be above 100. I want an epi...yeah Im a whimp...but I go back friday and Hoping that they went up more then the 92. *Sign* they better be I dont think I can do labor without meds. IF they are down its time for another round of IVIG>

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13484 by cloyd915
Replied by cloyd915 on topic Re: Quick update
Labor without meds is hell...I give credit to women who can do it, I'm not one of them :laugh:
Funny it seems like everyones OB has different expectations for where the counts should be for medication...I noticed "Drifter" is trying to be above 80,000 and you 100,000.

I just got IVIg today I meet my high risk OB Monday and have blood test scheduled so I am keeping my fingers crossed for good news!

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13520 by tigereyes
Replied by tigereyes on topic Re: Quick update
My hema spoke with the anastesiologist at the hosptial and they will not do it without a count of 100. Even though he has assured them that my platelets work well.

I cried today counts are dropping--down to 82 today. So I have IVIG scheduled for tuesday next week and Im hoping Im dialated so they can start my induction next week. I just sat and cried, he wants me to consider steriods and I really dont want them. I worried about breast feeding. My OB told me today that if I am not dialted by 39 weeks they will do a c section but thats not what he wants. Hes hoping that I can do a vaginal birth and so am I. Just had an upsetting appt today. Im ready to be done with all these appt and I just want my son here healty. Ive done so well up until a few weeks ago. Sorry about the vent Im just upset.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13523 by cloyd915
Replied by cloyd915 on topic Re: Quick update
:( Awww Jen I'm sorry you had a shitty appointment. You can vent ANYTIME you need to my dear. We are here to support one another and this is a very difficult thing to go through. Add to the fact that there are a TON of things going on with our bodies and we are worried about our babies and just want our little ones to arrive healthy. I certainly wish this pregnancy had been different for me and I have also sat and cried on may occasions since my diagnosis. Its okay.
Have faith in your health care team and do what they recommend. You are almost done and your little man is almost here!
Prednisone is a funny drug, gotta outweigh the pros and cons, but generally it is safe for baby (I've been on Prednisone since early Feb) though I am curious what you and your doctor discussed about the affect of this type of drug and breastfeeding?
Fingers crossed you deliver as you want but you know the big picture is your little man. For the record, c/s is not so bad and like I told "Drifter" the other day, c-section babies are beautiful.

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13529 by tigereyes
Replied by tigereyes on topic Re: Quick update
Im more worried about the recovery time with a c section. I really dont want it. Im not sure why I just dont want it. Its just hard to explain. Im worried about the steriods and breast feeding. I dont want the baby to suffer through the prednisone withdrawl I am all too familar with. I only respond to high doses--anything over 50mg. I know it will take months to taper off. I was too upset to talk about steriods and breast feeding today. So I guess it will have to wait until next week. At least I hope I remeber to ask about it. My doctor is honeslty concerned and I know he is doing what is best for me and my baby but it doesnt make it any easier. There are decisions I must make and its hard to make it without anyone who has been there done that. My future mother in law says things to me like "My friend had a baby and becuase she took drugs the baby had brain damage...: Yeah thats what I want to hear when Im about ready to have my son and have all these decisions to make about it. IM scared and dont need to hear horror stories.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 2 months ago #13539 by cloyd915
Replied by cloyd915 on topic Re: Quick update
:pinch: Oh your MIL sounds like my mother...ray of sunshine...
Is this your 1st baby? There is a recovery period no matter how he comes out. And there will always be people like your MIL in offer unsolicited "advice". Do the best you can. Prednisone wdls do suck. I've been chipping off 10 mg a week for 5 weeks...3 weeks to go...
I hoped and prayed for a vaginal delivery with my first but ended up having a c/s and honestly wouldn't DREAM of delivering another way now. Not to mention its a longer hospital stay which some people hate, I actually LOVE the extra help, rest and attention.
Can you pump to keep your milk established while you take the steroids then after you ween offer him your breast? I know its not ideal...who knows if he would even take it after being bottlefed formula, I'm just trying to find another way around it. Chin up my friend. <3

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago #13545 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Quick update
Shame on your mother-in-law to say something like that! You don't have complete control over the situation. It really bothers me when people say things like this. They don't completely understand ITP. You need to look out for whats good for you and the baby and don't listen to comments like this. As it is, it's hard making our decisions when it concerns ITP. Good luck to you (both of you) and Cloyd:)

I will pray for both of you. DeeDee

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  • Sandi
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13 years 2 months ago #13547 by Sandi
Replied by Sandi on topic Re: Quick update
Both Prednisone and IVIG are considered to be safe for the baby. I know you don't want to subject the baby to that, but it won't be as bad as it is for you. You're almost there, Jen!

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13 years 2 months ago #13550 by
Replied by on topic Re: Quick update
I know you don't want to take prednisone - my friend had to take it right before she gave birth and her baby was fine.

Close your ears to your future mother in law - you need to learn to do that!

Wow, it seems like yesterday you told us you were pregnant!

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13 years 2 months ago #13574 by tigereyes
Replied by tigereyes on topic Re: Quick update
Thanks guys. I really had a crappy week and its nice to hear someone say Im not a horrible person because I want whats best for my son. 2 more weeks max and hes out. Im hoping for a vaginal birth but my have to get a c section. Hopefully IVIG will keep me up this week and lets hope Aiden is ready so we can get teh show on the road.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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