my daughter just been diagnosed with ITP. she is 15 years old and has been on prednisone for 4 months. Has recently had solumedrol iv injections for 3 days--back on 20mg prednisone daily for 2 more weeks, then we'll try to wean her off--has been on plaquinel for 2 months--we'll see where the platelets are soon. This has been a nightmare for her as well as the family--
I was diagnosed with ITP when I was 13, Im 17 now. I woke up to a nosebleed that wouldnt stop, I would lean my head over the sink and it would just drip and drip, when the bleeding didnt stop my dad took me to the emergency room, at first they had no idea what was going on, to stop the bleeding, the doctor had inserted a nasal tampon into my left nostril. I was transported by ambulance to Childrens. I was admitted and my blood was drawn, it showed that my platelets were at 16. I was there for about two weeks, being monitored, the doctors came in and talked to my parents, I could tell on their faces that they didnt think I was going to clot. They had me take a transfusion, not a blood transfusion. The next day my platlets rose to the 300's. I was monitored and given medication to take while I was at home. After I got home, I went to my regular pediatrician, and had my blood drawn every monday, some tests were done by my pediatrican the others were done at Childrens.
My platletes would flecuate on and off. Recently I have been told by a doctor that I am in remission. But I still occasionaly get nose bleeds. I never had any bruises the whole time I had ITP, I did have the rash on my arms. I had recently begun my first period and its day three and the bleeding seems to be fine, Im still very scared that it might take a turn for the worst but im still hopeful. My experience with ITP was the most terrifying things I've ever had to go through, and I hope that I never have to go through that again, the fear was probally the worst part. Thats the main reason that Im very indecisive to want to have children, I dont want to pass this down to them and have them go through the same things I've had to go through. I hope this helps, and I hope your daughter is doing fine, and stays strong :)
Hi Geriedawn :) I have been dealing with Chronic ITP for the past 6 years. I am a 40 yr old female. All I can say in response to your question is this: everyone is different. Some patients bounce back from prednisone therapy while others do not. The same is said for splenectomies and various infusions (rituxan, ivig, solumedrol, etc... ). I have worked my way down the list and am currently getting combination of IVIG/Vincristine infusions every two weeks. Vincristine is a form of chemo (not as strong as cancer treating chemos). You might ask your doctor about Dapsone (sp?). This is where we are headed next with the treatment plan. I would recommend that you look at Platelet Disorder Support Association (www.pdsa.org). They can provide you with very helpful tools and questions to ask the doctors.
I will say this and I don't say this to discourage you but to prepare you: right now, there is not a known cure for ITP. We can go into remission but with a cold or something similar can find the ITP retriggered. This happened to me. I hope that I have answered some of your questions and will keep you and your daughter in my prayers. Praying for God's healing Mercy :)
- Prednisone Information for Consumers
- Prednisone Information for Healthcare Professionals (includes dosage details)
- Side Effects of Prednisone (detailed)
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