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up to 80mg/day of prednisone

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15 years 2 months ago #9468 by lizzels
up to 80mg/day of prednisone was created by lizzels
My hema just called after getting my bloodwork from yesterday and he upped my dosage from 60mg/day to 80mg/day. After 5 days on 60mg/day, my count went from 55 to 81, so he wants to try to up the dose to get my count above 100 by next week. I haven't had any side effects from the prednisone (so far - knock on wood!) so he decided to try upping the dose. We're trying to get my count above 100 ASAP so that I won't need general anesthesia if I need a c-section.

For those of you who did not see my earlier post, I am 35w4d pregnant and getting very close to developing preeclampsia, so they want my platelet counts up now so that they can deliver early if possible, especially because preeclampsia itself can drop your platelets. The anesthesiologist at the hospital where I am delivering told me he had a patient with ITP whose counts were at 80 throughout her whole pregnancy and she developed preeclampsia and her counts dropped to 15 very quickly.

So now we're trying 80mg/day for a week, and if my count is not above 100 next Monday, we'll do ivig. Wish me luck!

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15 years 2 months ago #9471 by gsh
Replied by gsh on topic Re: up to 80mg/day of prednisone
Good luck Lizzels! I hope you get over 100 asap and the birth goes fine. I'd be tempted to do IVIg anyway if they want to deliver the baby in the next week. Please keep us posted here or in the pregnancy section. I'm 27 weeks.

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15 years 2 months ago #9611 by lizzels
Replied by lizzels on topic Re:up to 80mg/day of prednisone
Here I am, back with an update!

My platelet count from CBC yesterday was 106, so I am above the magic number of 100 that the anesthesiologists say is safe for epidural and spinal anesthesia (both for labor and in the event of a c-section), so that is good news! I was hoping for a little more of a boost and I would rather have more of a cushion (106 is awfully close to 100, and I know the machines aren't that accurate - I would be upset if I retested and was below 100) but at least it is a continued increase!

So here's where I've been over the past few weeks:

Wednesday 11/3: Count 55, started prednisone 60mg
Monday 11/8: Count 81
Tuesday 11/9: increased prednisone to 80mg
Monday 11/15: Count 106

The hematologist is keeping me on 80mg for now and does not want to do IVIg at this point. We'll check my platelets again next Monday (assuming I don't deliver before then). I will be 37 weeks on Friday and have an OB appointment tomorrow, so I have to see what she thinks. They are also monitoring me for gestational hypertension and watching to make sure it doesn't turn into preeclampsia, and my blood pressures have been creeping up the past few days. They have been talking about delivering early (which is why I started treating ITP at 34 and a half weeks instead of at 37 or so) so I know that is a possibility. Honestly, I'd be happy to just get the baby out as soon as he is full term on Friday. I do not want my BP to shoot up and my platelets to crash, since if I do develop preeclampsia that also lowers platelets. Also, the sooner this baby is born the sooner I can start tapering off the prednisone. This insomnia is NO fun, especially since I am on bed rest! Oh well, we'll see what the OB says tomorrow. But so far I'm not complaining - a jump of 55 to 106 in two weeks is nothing to sneeze at. :)

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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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15 years 2 months ago #9612 by Sandi
Replied by Sandi on topic Re:up to 80mg/day of prednisone
That's great news! I hope all goes well. Staying on Prednisone may cause your BP to rise - I hope they watch that.

My water broke at 37 weeks so I didn't have a choice but to deliver. She was a healthy 6 lbs 13 oz. Ha - an ounce bigger than her sister who was born 3 days late.

Good luck, Liz!

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15 years 2 months ago #9730 by lizzels
Replied by lizzels on topic Re:up to 80mg/day of prednisone
Here's my update for anyone who is following.

Well, I got my CBC results back from yesterday, after staying on 80mg of prednisone for another week, and my count was down to 64, after being 106 last week. :(

I had an OB appointment today (I'm 37 weeks 4 days today) and she said she thinks the CBC probably wasn't accurate and that they should do a manual count instead. I have a call in to the hematologist and I'm waiting to hear back, but I can't help but feel stressed in the meantime.

I'm crossing my fingers that the CBC was just wrong. I know that a count of 64 isn't dangerous in and of itself (my count has been around this number loads of times and I never treated for it before I was pregnant), but I hate being on prednisone if it isn't even working. And the OBs and anesthesiologists want my count at 100 before I deliver, and it obviously isn't there now.

Hopefully the hematologist calls me back soon. I'm not sure what he'll want to do. He had said that he would want to do IVIg if the prednisone didn't work. We'll see. I'd been feeling so optimistic last week after my count was above 100 and now I"m just really frustrated/disappointed. Thanks for listening to me vent everyone.

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15 years 2 months ago #9731 by SteveC
Replied by SteveC on topic Re:up to 80mg/day of prednisone
ITP, Pred, refractory, frustration, multiple opinions, waiting on callbacks, bouncing counts - What a JOY to have such a fun medical disorder! Add in a pregnancy, stir and mix thoroughly to add a little more stress! :(

Venting is one of the major reasons we're all here so vent often - you're justified. All I can do is pray for you and your baby and believe everything will be resolved for you and the baby.

Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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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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15 years 2 months ago #9733 by Sandi
Replied by Sandi on topic Re:up to 80mg/day of prednisone
Liz - hang in there. No matter what the counts are at delivery, the end result is the same; sweet baby in arms!

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15 years 2 months ago #9734 by lizzels
Replied by lizzels on topic Re:up to 80mg/day of prednisone
Sandi and Steve, thanks for your replies. Sometimes it just helps to hear from people who have been through similar things dealing with the fun that is ITP.

I know that one way or another, the baby will be here soon and we will both be just fine. I'd just rather have a little smoother road to get there! And I was so happy when my count was above 100. Oh well. Still haven't talked to the hema yet. He is supposed to be calling me in the morning. I hate waiting for doctors to return my calls and dealing with making sure all my different doctors (the OB, hema, MFM specialist for high risk pregnancy) know what's going on. All these phone calls and managing my health care is a like a full time job!

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15 years 2 months ago #9786 by lizzels
Replied by lizzels on topic Re:up to 80mg/day of prednisone
So much for my low count being a fluke. Had a manual count today and my platelets were down to 54. Again, I know that a count of 54 is fine in and of itself, but obviously being on 80mg of pred for the past three and a half weeks, and having a count of 106 a week and a half ago, this is not what we wanted.

I'm being admitted to the hospital tomorrow morning to get IVIg, probably over two days. So I get to spend the whole weekend in the hospital - fun!

I've also learned an important lesson - make sure all of your doctors have privileges at the same hospital! My hema does not have privileges at the hospital where my OB delivers, and the OB was not comfortable with me receiving IVIg somewhere else just in case I have a bad reaction of some kind that affects the baby. I like my hematologist just fine, but after this pregnancy is over I'm thinking of finding someone with privileges at this hospital just so that in subsequent pregnancies it is easier to deal with coordinating everything.

Wish me luck - hopefully I respond well to IVIg! They are talking about inducing me at the end of next week, so ideally I'll have increase within a few days.

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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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15 years 2 months ago #9788 by Sandi
Replied by Sandi on topic Re:up to 80mg/day of prednisone
Good luck, Liz! Check in when you can!

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15 years 2 months ago #9789 by eklein
Replied by eklein on topic Re:up to 80mg/day of prednisone
That's a really good point about considering where your doctors have hospital privileges. You might want to post that advice over on the pregnancy folder. That's exactly the kind of thing we can learn from each other and no doctor is going to tell us.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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15 years 2 months ago #9792 by lizzels
Replied by lizzels on topic Re:up to 80mg/day of prednisone
Good idea. I will post this on the pregnancy board.

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