I have been stable on 25 mg of Promacta for about 5 years. However, I really want to have a baby. I am steroid resistant, rituxin resistant and IVIG stopped working after the 8th time. I found a great hematologist willing to work with me. He is having me go to promacta every other day for a month to see where my counts are. If my counts are ok he will try to take me off Promacta and see where my counts are. Has anyone else been able to go through a pregnancy being steroid and ivig resistant?
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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How are your counts on the 25 mg's of Promacta?
There have been women here who have had low counts with no response to any meds who have successfully had babies. They had a good, high-risk OB who worked with their Hemo and got them through it. I'd find the OB first and speak to him/her before getting pregnant. You may have to forego an epidural but having done it twice myself (by choice), it's not that bad.
I am 38 and since one year I have been diagnosed with ITP and my counts are all over the place, between 6 - 600 depending on the treatment, so far I have tried steroids, Eltromobag, and IvIG with different dosages and combinations, but nothing seems to get a stable response, it's like a roller coaster. I never know what s gonna happen in a couple of days. The longest phase (ca. 4 weeks) with good levels were with the combination of Eltrombobag and regular IvIGs.. but, I really want to get pregnant and eltrombopag is contraindicated in pregnancy. so I have taken it out to see how i will manage it with juts regular IvIGs. I thought it might help me with decision making. SO far its not very good. It helps for a week or so but then it drops again below 30. I am very scared of potential complications and of the whole process.. I really need some reassurance. My doctors are good but so far they have not had much experience with ITP in pregnancy so I don’t get any reassurance from them at all.
At the 2018 conference Dr. Terry Gernsheimer spoke at length about how yes, you CAN have a baby with ITP. She said to find an ob/gyn who is experienced with high risk pregnancy. The likelihood you'll need that isn't even a certainty, but be prepared by being sure your doc is experienced with it. I'm sure you could reach out to Dr. Gernsheimer in Seattle for more advice. She says if your ITP doc says "no", find a new one.
33 yo with counts 45k-160k on 75mg Promacta. Recent splenectomy.
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Thank you for sharing, I'm so happy to have found your thread. I've been on promacta for 8 years (75 mg) and just tried splenectomy to see if that would help me go off the drug so I could have a baby. Not sure if it has worked :/. How long did your doc say you would have to wait post promacta to try getting pregnant?
I responded (temporarily) to steroids when I was first diagnosed but I don't know if I am IVIG resistant yet. I did meet with an OB who said that's what we would try if my counts were too low during pregnancy. So I don't know what they would do if one was resistant to these "pregnancy-safe" treatments. Will be following this thread!
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