Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

12 year old - Lysteda? 9 years 11 months ago #29550

  • indi214
  • Offline
  • Posts: 2
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

12 year old - Lysteda? 9 years 11 months ago #29553

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2369
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?

Please Log in or Create an account to join the conversation.

12 year old - Lysteda? 9 years 11 months ago #29554

  • indi214
  • Offline
  • Posts: 2
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

12 year old - Lysteda? 9 years 11 months ago #29556

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2369
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.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo