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Newly diagnosed ITP 2 weeks ago 2 months 3 weeks ago #72466

  • ShinMegami
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Hello, I'm a 27 year old male healthy lifestyle. I just recently got diagnosed with ITP and Lupus (I heard that this is often misdiagnosed). I had ivig in the beginning but that didn't work.

I've been in the hospital for 3 weeks now and my platelets are still around 10k-20k with transfusions here and there. They keep giving me platelets when it drops below 10 that's their panic mode. Around 2 weeks ago I started my medications I've had one dose of Rituxn. I've been given Solumderol, Hyrorixyclocine(Lupus), Mycophenolate and cyclosporine.

The cyclosporine seemed like it worked because platelets went up I was on it for a few days but my megnisum levels went critical so they took me off that. In fact they are taking me off all immune suppression don't know if it's just tomorrow for my second dose of Rituxn.

I've heard that most of these drugs takes weeks to respond and I haven't been on them that long, I feel like my doctors here in the hospital is moving to fast with switching drugs is this true or is this normal to switch this fast?

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Newly diagnosed ITP 2 weeks ago 2 months 3 weeks ago #72471

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Sounds horrendous...are you being cared for by ITP specialists?  Doesn't sound like it to me as they would be following the international guide lines see link ( looks unfinished but it works)   ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

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Newly diagnosed ITP 2 weeks ago 2 months 3 weeks ago #72472

  • ShinMegami
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Thanks for the reply I'm going to ask today are the hemotologist ITP specialist, if not I'm going to look to getting out of the hospital and find an ITP specialist. I haven't got no crazy side effects from the drugs. My body is hella resistant to drigs. I got bad bruises in my arm from failed attempts to put in an IV, but they are healing despite low platelets, once I get them up I know they'll go away.

I also had a plasmapheresis done over 5 days last week.

I don't know if they'll let me home since I'm still low I was 11k as of Wednesday.

You think the Lupus diagnosis can be a mistake? The Rumotologist here said I have Lupus, That team said Lupus can be the cause of my platelets dropping don't know if that's true.

Glad I found this forum instead of panicking, I can ask some hard hitting questions if I don't like the responses then I am switching doctors.

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Newly diagnosed ITP 2 weeks ago 2 months 3 weeks ago #72473

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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Sorry you're having to deal with an overzealous medical system.  I happens all too frequently with this disease.  You shouldn't panic, and it would be better if you had doctors who wouldn't, either.  

I was diagnosed at age 58 and am in my 70s now.  I've had single-digit counts more times than I can remember, although not very often since late 2014 when I started NPlate.  I've never once been hospitalized because of a low count. 

You may not be able to find a hematologist whose main focus is in ITP.  I live in a major midwest city that has two university-based medical systems.  I could find only one ITP specialist, but he was out of date in his methods and would not tolerate my refusal to have my spleen removed.  Your better bet is to do your own research to learn as much as you can absorb about your disease.  Then look for an open-minded hematologist who won't mind your input about your treatment preferences and tolerances.

If you haven't yet read the Patient + Caregivers section on this website, start there now.  It's one of the best resources with the most up-to-date information I've seen yet.      

How did they arrive at the lupus diagnosis?  A suspicion based on low platelet count alone can't confirm anything, if that's what they're using.  Diagnosis takes a battery of tests, and even that isn't always definitive.       

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