Hi, my daughter was diagnosed at 15 years old with ITP (June 2015) with platelets at just below 50k. For a while we didn't do anything since her platelets weren't too low. When they dropped to around 30K in late fall of 2015, we began IVIG therapy. Initially my daughter had pretty good results with platelets rising to 70K the first week. With each IVIG monthly treatment afterwards, we found her platelet response dropped. In spring of 2016 she had an awful nosebleed and had to go to the emergency room where they gave her IVIG which helped boost her platelets.
We then tried Prednisone for about 6 weeks and it was a terrible experience (moon face and weight gain, night sweats and an inability to sleep). Initial platelets went up above 85K, but then quickly dropped. Due to the terrible side effects, we tried Rituximab in May. Results were poor with platelets in 20Ks.
At that point, we were concerned that so many chemicals were in her body. For about 7 weeks, she has been trying herbal therapy (Spleen Activator - Chinese herbs, Vitamin B, and a variety of other herbs). Her levels are around 10K.
We are very frustrated. Our doctor has recommended the new drug, Eltrombopag. ITP patients though have only used this drug for about 5 years so the effects on bone marrow aren't known yet. I read there have been negative liver and cataract side effects in some cases. Does anyone have experience with Eltrombopag?
Before going forward with Eltrombopag (as recommended by our hematologist), I would be more comfortable with getting a second opinion. Another doctor may have ideas we aren't aware of. (Our doctor indicated if Eltrombopag does not work then the last option would be a Splenectomy. Of course, this is not something we are ready to do yet.)
Can anyone share a doctor or hospital they have had very good experiences with? We are currently seeing a pediatric hematologist at Children's Hospital of Alabama. Her care by the entire medical staff has been very good. I just want to know if there are other good treatments we aren't aware of. I am willing to go out of state to get a second opinion - just need to know from fellow ITP parents who they recommend.
Lastly, can anyone share their experience with Eltrombopag (positive/negative, side effects, dosage) as well as Promacta (we haven't tried this and don't know much about it)?
Thank you and prayers for all of those affected by ITP.