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Spleenectomy doesn't cure ITP? 11 years 10 months ago #1333

  • sjgriffis
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My daughter was dx'd with ITP 6 mo's go. She was on massive doses of Pred (800mg 3xdy), & now has had 2 IVIG treatments that left her with excruciating h/a's. Like many other's, her platlets increase for a couple days after IVIG but drop below 10 after a few days. She now refuses to do it again. The doctor is encouraging spleenectomy. He made it sound like this procedure would end her ITP problem. Sounds like this is incorrect information. Also, does anyone know the incident rate of cancer among ITP patient's?

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Re:Spleenectomy doesn't cure ITP? 11 years 10 months ago #1336

  • CindyL
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Hello, SJ, welcome to the "family".

How old is your daughter? What other treatments has she tried? Does she have any issues with bleeding or other symptoms? Sorry about all the questions, but they will help with suggestions for treatments. There are a lot of treatments available to try.

Your doctor shouldn't have made it sound like a splenectomy would put an end to your daughter's ITP. It's just another treatment that might or might not work. Mine didn't. What dose of pred is your daughter on now? She did well to take 8oomgs! I can't do any more than 30.

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Re:Spleenectomy doesn't cure ITP? 11 years 10 months ago #1339

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi SJ:

I'd also like to know what other treatments your daughter has tried. There are more than steroids and IVIG.

Splenectomy has the greatest remission rate of all the treatments, but is by no means considered a cure. It might work for a few weeks, months, years, or a life time, but ITP can still always come back. The reason is that sometimes the platelets are destroyed in the liver and not the spleen. If that is the case, a splenecotmy won't work. Even if it does work initially, the liver can take over the destruction in time.

I think a second opinion might be a good idea. As Cindy said, that steroid dose was unusually high. 800 mg's 3 times a day? Most of us take 20 mg's 3 times a day, if that! I don't know how she could tolerate that.

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Re:Spleenectomy doesn't cure ITP? 11 years 10 months ago #1372

  • jmg77
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regarding cancer, the important thing to keep in mind (in my opinion at least) is that ITP is a diagnosis of exclusion, and if a good hematologist believes that your daughter has ITP, it's because they've ruled out a lot of other scary things that include low platelet counts amongst their symptoms.

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Re:Spleenectomy doesn't cure ITP? 11 years 10 months ago #1373

  • Melinda
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800mg of prednisone 3 times a day???

Good lord you would have read about me in the newspaper if I had to take that amount - and it wouldn't have been a nice article either!! :evil:

What type of doctor is your daughter seeing?

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Re:Spleenectomy doesn't cure ITP? 11 years 10 months ago #1380

  • tofer
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yeah that is way too much pred there would be bodies for miles and miles if i was on that much pred not to mention when would you ever sleep again???
And seems like that would make your blood sugar go way wonky... maybe there are too many 000000 in her amount maybe is 80?
:ohmy:

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