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Pregnancy and ITP

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11 years 3 months ago #42275 by JamieLea
Pregnancy and ITP was created by JamieLea
Hi all. I am just writing in hopes to get some advice from others that have been in my situation or can relate. I am currently thinking about baby #2 and feel a little defeated after seeing my hema. I was on lots of prednisone with my first child from week 18 on. I was on pred for around 6 months and like everyone else I hate it. I didn't look like myself, got horrible acne after I was wened off the medication and of course the worry of possible side-effects to my son. My hema is pushing for the spleen removal which is something I am not very keen on. Who knows if it will even work. I guess my question is for those that have done Rixtuican should that be an option. I have never tried this and I know you have to wait a year to get pregnant but I guess no-one really knows if it will work for them and for how long. Does anyone that has had it work for an extended period - any idea why it worked for you, for so long?

Also, on this website when you find ITP and pregnancy it says that pred and ivig are commonly used to treat. Then in the end of the paragraph it says that recent studies have showns that steriod use in pregnancy can cause mental disorders in offspring (ex. pred) does that ex mean example prednisone or exclude prednisone. Just curious. Thanks for listening - as always.

Jamie
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11 years 3 months ago #42276 by JamieLea
Replied by JamieLea on topic Pregnancy and ITP
Also, my hema said that counts in a second pregnancy will go down lower and faster. Have others of you noticed that in multiple pregnancies?
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11 years 3 months ago #42380 by Katsim
Replied by Katsim on topic Pregnancy and ITP
Hi Jamie

I can't answer your questions really. I was diagnosed in 2012, my daughter was born in 2011 and I've been trying for number 2 now for almost 18 months with no luck (long story - not for now).

I have had lots of chats with my haemo about rituximab though. He wanted me to try it. However when I argued that you have to wait a year AND remission lasts up to a year in the majority of people it works for we agreed not to bother. There is a study about rituximab which suggests that when it commences just after a dex pulse it is more likely to last longer but my haemo wouldn't consider that as an option - he felt it was too much to put my body through. We decided that the best course if action now is to "just get pregnant" (I wish!) and we'll deal with it from there. I do have every confidence in my haemo though and I trust his judgement.

Have you tried any treatments other than steroids? I have also tried ivig so I know that works & can be a backup for me.

:-)

Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".
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10 years 10 months ago #45262 by cnwoods82
Replied by cnwoods82 on topic Pregnancy and ITP
Jamie

I was diagnosed in 2010....I have tried all medications have had plenty of transfusions....I had my spleen removed in June 2012 and that didn't seem to work the only way I have kept my platelets up is 20mg of prednisone daily im currently 11weeks pregnant(2 baby)and so far have had no complications. We tried for a year before we got pregnant and ive been told the only problem my baby might have at birth will be low platelets which they can give...hope this helps and wish you luck on your journey!

Feel free to ask me any questions
CARLY