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TOPIC: Someone talk

Someone talk 1 month 5 days ago #65799

  • Alicia22
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Hi guys. I am 15 years old and I was diagnosed with ITP over 4 months ago. Its been a hard rollercoaster during this time. Ive been on Prednisolone every time I start bleeding somewhere new but it doesnt work as well as it used to- my platelets haven't been above 10 for 4 months. Ive tried ivig and that didn't work. The doctors want me to try 2 days of ivig with Prednisolone. I then want to try the n plate when I turn 16. This is a tough ride, and I would love if someone could please talk to me about this stuff as it would be nice to know I am not alone.

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Someone talk 1 month 4 days ago #65808

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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It's really odd. Some folks respond well to both steroids and IVIG, but not to either one alone. If both work, then you'll know you can fall back to that when/if necessary.
Nplate or Promacta should work well. Life can get back to normal after a while on these. One doesn't have to worry about counts near so much.

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Someone talk 1 month 4 days ago #65828

  • Alicia22
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Yeah I've heard that, hopefully it works that way for me. What is/was your treatment?

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Someone talk 1 month 3 days ago #65840

  • Hal9000
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Well let see. I started with a Dex pulse, then IVIG, then Rituxan. IVIG response was very good but the others were total failures. I've been on Promacta since - about two years now. Five months ago I added Danazol to the mix. Second try with it. This time with a lower dose to keep my liver happy.
Do you have any hints as to what may have triggered ITP? Post back how things go with the combo treatment.

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Someone talk 1 month 3 days ago #65853

  • Alicia22
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Ohh you've been through a bit. Were you at school while doing Rituxan? How old are you, if you don't mind me asking? What do your levels stay around? Did you play any sport while trying to find something that works? The only thing I had was hayfever, but sometimes I think that may have caused something. Do you know what causes yours? My doctor has just recently decieded against the combo, instead they want to try Rituxan. From Alicia Myers

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Someone talk 1 month 2 days ago #65860

  • Hal9000
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Me, I'm retired. It seems older and the younger folks become afflicted with ITP. Middle aged, not so much.

With both Promacta and Nplate the preferred goal is to keep counts between 50 and 100. This is because the risk of blood clots goes up as one's counts go up. The dose of the drug is adjusted to achieve the count range. I should be around 70-75 right now.

Being retired, I've spent a lot of time researching ITP. I suspect I got ITP as a child when I got Chickenpox. Never had a blood test and had lower counts with easy bruising all my life. They discovered the low counts when I had an appendicitis in 2016.
You know, others have mentioned hay fever on this site. One was user 'DeeDee Marie'. She responded well to steroids though.
pdsa.org/discussion-group/7-treatment-general/29382-antibodies-to-nplate-loss-of-effectiveness.html#57037

I guess that is disappointing about steroid and IVIG combo. A simple thing to try. From what I've seen here, Rituxan normally works for those with a steroid response, but occasionally works for those that don't respond to steroids and IVIG. LOL, those like me, who respond to IVIG and don't respond to steroids never respond to Rituxan. I didn't know that until I researched other user accounts here on PDSA. If I had known, I would never had tried it.

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Someone talk 1 week 3 days ago #65984

  • sillyman
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Any update?

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Someone talk 1 week 2 days ago #66002

  • Alicia22
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I have been told I am allowed to play netball which i am really happy about! My levels are still the same though (under 10). I am going to be trying another set of tablets before my retux. How are you going?

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Someone talk 1 week 23 hours ago #66017

  • sillyman
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Alicia22 wrote: I have been told I am allowed to play netball which i am really happy about! My levels are still the same though (under 10). I am going to be trying another set of tablets before my retux. How are you going?

Why do you take such risk? Are you aware about your condition? I have terrible experiences with low platelets count. Your average WBC?

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Someone talk 1 week 17 hours ago #66024

  • Alicia22
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My doctors said I am allowed to play so I am going by what they say. My WBC is fine. What treatments have you had?

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Someone talk 1 week 8 hours ago #66032

  • sillyman
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Alicia22 wrote: My doctors said I am allowed to play so I am going by what they say. My WBC is fine. What treatments have you had?

I have big story to tell but I don't want to scare you. I think you are not old enough to read it. I can tell if you really want to know.

Long story short; Be smart. Never trust your doctor. Don't be just another lab rat. Trust your sense not your gut feeling. Understand your condition yourself. Always try your best to stay away from unnecessary things.

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