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Adults With ITP
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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag.
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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68021

  • 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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Initially diagnosed in 2014 with a count of 12 and covered in bruises from head to foot after a gardening accident.
Various treatments over the next 3 years when I always knew that my count was crashing; unexplained bruises below 30, frozen stiff below 20, oral blood blisters below 10.
Since starting Eltrombopag almost 3 years ago I initially had symptoms but I've had 2 serious crashes this year, firstly in April following the stress of looking after Dad recovering from his stroke. A nosebleed was the only symptom with a count of 8.
Had my routine monthly test last Friday and knew I was starting with a cold:- count 32 so haemo asked for a repeat yesterday as my count always drops with a virus. No bruises, no blood blisters, can't comment on being frozen as now absolutely full of cold and feverish. Count came back at 7 !!! Oh joy pred rescue again.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68031

  • Carcamoc10
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I mentioned to my hemo a while ago that I felt like Promacta was lessening the severity of my symptoms to the point that crashes would catch me off guard. Nothing crazy would happen until I would get below 10K and by then, we would panic :/ he didn’t really say why this happens, have you asked your hemo about it?

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68032

  • mrsb04
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Not yet but will do when I see her next. I've trawled the web but cannot find anything.
I'm also going to discuss taking a quick steroid rescue when I know I am starting with a cold to pre-empt any crash. I suggested doing that this time but she asked me to hang on and retest in a week and look what happened.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68033

  • Carcamoc10
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Wow, I’m really sorry...I hope you get better soon!

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68034

  • 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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Thank you. Carcamoc
My cold is improving slowly, having to shovel in extra Pred for 5 days isn't helping my immune system fight it off efficiently.
My count will go back up over the next couple of months. I'm not changing either Pred or Eltrombopag doses. The month before count was 71 which suits me just fine.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68037

  • Bakes1969
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Hi.

I have just joined this forum as I'm desperate now. Please try and look me up. Bakes1969. You are so similar. Please see what I have posted and then get in touch. Pneumonia and sepsis at 6,000 for me. Diagnosed in 2017. Eltrombopag been recommended as Pred doesn't help.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68038

  • Bakes1969
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Hi.

I have just joined this forum as I'm desperate now. Please try and look me up. Bakes1969. You are so similar. Please see what I have posted and then get in touch. Pneumonia and sepsis at 6,000 for me. Diagnosed in 2017. Eltrombopag been recommended as Pred doesn't help.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68068

  • Hal9000
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Anne, aren't 'microplatelets' the reason for less symptoms? That because of imperfect destruction of platelets by the immune system, more microplatelets exist with TPO-RA treatments.

You know, when I think about your relative higher Promacta dose, I think back to momto3boys. How she took steroids off and on for years/decades before moving to Promacta and needing relatively higher doses. I wonder if Pred is the link.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 6 months ago #68081

  • 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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  • Karma: 7
  • Thank you received: 608
You may well be right regarding micro platelets Hal. Not sure what you mean about relative higher dose of Promacta though, I'm on 50mg.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag. 3 years 5 months ago #68132

  • Hal9000
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I don't keep track of it but it seems like most that respond to steroids often end up on 25mg of Promacta. One exception, perhaps the worst case exception, that comes to mind is momto3boys. Recall that she needed 75mg to elicit an initial count response. Then later, at different times needed 50mg or alternating 50 and 75mg at other times.

If one does a little research on CMV induced ITP one should find that steroids are problematic. They can make the virus worse and counts go down. Also important. Where CMV is the primary/only cause of ITP, treating CMV and reducing its inflammation can lead to ITP remission.

So I got to thinking. What if one had EBV triggered ITP, then later, one develops a CMV issue as a complicating factor due to taking steroids for extended periods of time. And with that, I wonder if EBV and untreated CMV combination could lead to higher Promacta doses.

Just a thought.

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Symptoms of a platelet crash seem to have disappeared whilst taking Eltrombopag.

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