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12 year old - Lysteda?

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12 years 10 months ago - 12 years 10 months ago #29550 by indi214
12 year old - Lysteda? was created by indi214
I have a 12 year old who is currently on day 18 of her period and has had ITP for about 7 years. She hasn't had any bleeding episodes lately. Dr. wants to put her on Lysteda. Does anyone have any experience with this drug? I am very nervous as everything I read says, no studies for anyone under 18. I want to help her have a normal life but I don't want to put her at risk for other side effects. Any help will be greatly appreciated.
  • 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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12 years 10 months ago #29553 by Sandi
Replied by Sandi on topic 12 year old - Lysteda?
Yikes! That's a horrible decision to have to make. I had that same problem with my daughter when she was 14. She had horribly heavy periods due to, what we now know, was a thyroid problem. Anyway, she was on a low dose of BC to ease the flow and we now feel it was a mistake. She became very depressed on the drug and had nasty mood swings. Since it didn't happen for weeks after she started the drug, it took us a while to figure out what the problem was.

Also, since hormones play a big role in autoimmune disorders, it's scary to mess with that for fear of stirring up more problems. Some people with ITP also have antibodies that can cause blood clots, and birth control raises that risk.

However, if the bleeding is bad, you don't want her to become anemic, so you have to take that into consideration.

What are her counts?
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12 years 10 months ago #29554 by indi214
Replied by indi214 on topic 12 year old - Lysteda?
Thank you for replying. Her counts have been in the 90k range this summer, but I haven't gotten a count done recently, will have the new count on Friday. Lysteda is not a birth control, but a medicine that will reduce the heaviness of her period, it doesn't have hormones in it. I need to get some feedback from anyone that has used it. Thanks for the feedback on the birth control, that was the other option on the table. I am so nervous about all this and your story about the hormonal issues with your daughter is another concern that I have to consider.
  • 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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12 years 10 months ago #29556 by Sandi
Replied by Sandi on topic 12 year old - Lysteda?
Well, here's the thing. For most people with ITP, counts of 90 should not affect their periods. That's a pretty good count and I wouldn't assume ITP is the cause. Has anyone looked into another possible reason?

Sorry I misunderstood about Lysteda...I assumed it was birth control. I don't know anything about that drug or it's side effects.
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