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.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2375
Hello. I'm glad you found us.
Your daughter has been through the standard treatments and in a pretty typical order. I'm sorry that she hasn't responded so far. You were questioning other options and there are a few, but in my opinion, they are worse than Eltrombopag. I've been on the PDSA for a very long time and have read every story for the past 18 years (literally). Most people go through the list as your daughter has and most will agree that when they began Eltrombopag, life finally seemed to go back to normal. Eltrombopag (Promacta) and N-Plate, a similar drug, have fairly good success rates and few side effects. It can take time to get it dosed properly but when that happens, counts level out and the roller coaster ends.
There are only so many options available for ITP; there are no magic answers. A second opinion is never a bad idea, but as I said, the other options are not so great.
Decadron - a different, stronger steroid
Cell-Cept - an immunosuppressant
Imuran - an immunosuppressant
Cytoxan - Chemotherapy
That's it. Do you have any questions about any others on the list?
Music1068, If you are interested in herbal remedies, the one that some feel they have had success with is papaya leaf extract. It is used widely in countries where dengue fever is present, to treat thrombocytopenia.
How are your daughter's platelets since the Rituxan treatment. Some people get a "partial remission" which means platelet counts below normal, but not high enough to require treatment. My wife had Rituxan two years ago and her counts are now mostly in the 50s and 60s. She has dropped below 20 a couple of times, but each time we waited it out without treatment, and her counts returned to a normal range.
No treatment at all is the best treatment of all if you can get away with it.
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