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Brain bleed

  • SCOTTNCHASE72@GMAIL.COM
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8 years 4 days ago #60626 by SCOTTNCHASE72@GMAIL.COM
Brain bleed was created by SCOTTNCHASE72@GMAIL.COM
I am 45 years old and just suffered my second bleed. Platelets were fine for 6 years and suddenly dropped as low as 2000 recently without any warning just bruising and horrible headaches. Have had splenectomy and on a high dose if Prednisone"80mg a day" and numerous Ivig treatments. Now platelets are back to 23k and also getting Nplate injections. The low count has my head about to bust and continue to fear another brain bleed. Don't know where to turn to. Tired of running to the ER every headache I get. Need some good advice. Thanks. Scott
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 4 days ago #60630 by Hal9000
Replied by Hal9000 on topic Brain bleed
That's a difficult situation. A nightmare.
Nplate is some powerful stuff. Almost everyone responds to it, eventually. How long have you been on it and what dose (a number from one to ten which represents ug of Nplate per kg of body weight)? Also, do you respond mainly to IVIG? The prednisone doesn't seem to be doing much.
ITP Types and Treatments by HAL
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8 years 4 days ago #60632 by SCOTTNCHASE72@GMAIL.COM
Replied by SCOTTNCHASE72@GMAIL.COM on topic Brain bleed
Ivig seems to be working short term. Just started on the Nplate again after 8 years with no problems with the itp till recently. As for the dose I'm not sure. I'm 215 lbs so not sure how much I'm receiving. Platelets were at 196k a week ago and now as of Thursday back down to 23k and suffering horrible headaches. I hate to keep running back to ER every time the itp flares up but the brain situation has got me scared.
  • 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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8 years 4 days ago #60635 by Sandi
Replied by Sandi on topic Brain bleed
How long have you been on N-Plate? Has it worked for you before?
  • SCOTTNCHASE72@GMAIL.COM
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8 years 3 days ago #60647 by SCOTTNCHASE72@GMAIL.COM
Replied by SCOTTNCHASE72@GMAIL.COM on topic Brain bleed
Was first put on it in 2006 when I was first diagnosed. Was in it about q year until they removed my spleen and platelets became normal for a few years and until recently I didn't need it. Just started back on it end of July
  • 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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8 years 3 days ago #60648 by Sandi
Replied by Sandi on topic Brain bleed
It may not be working for you this time. You could try Promacta or Rituxan if you haven't already.
  • Hal9000
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8 years 3 days ago #60650 by Hal9000
Replied by Hal9000 on topic Brain bleed
Scott, would it be fair to say that you responded to steroids back in 2006?

Do you suppose they are increasing your Nplate dose every week?

About your headaches. Do IVIG treatments make them go away? Go away because your counts go up then? You mention you've taken Nplate since the end of July. Have you been having the headaches since then? Is it possible the drug is giving you worse headaches, or, does it not make any difference?
ITP Types and Treatments by HAL
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8 years 2 days ago #60661 by SCOTTNCHASE72@GMAIL.COM
Replied by SCOTTNCHASE72@GMAIL.COM on topic Brain bleed
Rituxan worked before. Just have to be inpatient in order for my insurance to cover it and Ivig.
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8 years 2 days ago #60662 by SCOTTNCHASE72@GMAIL.COM
Replied by SCOTTNCHASE72@GMAIL.COM on topic Brain bleed
Rituxan worked before. Just have to be inpatient in order for my insurance to cover it and Ivig. As of now nothing is helping the headaches except for pain meds. Very agitated
  • Hal9000
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8 years 2 days ago #60679 by Hal9000
Replied by Hal9000 on topic Brain bleed
The headaches couldn't be because of low counts right? If it were seems like the headache would go away with the higher counts from IVIG.
ITP Types and Treatments by HAL
  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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8 years 1 day ago #60686 by Cindy1
Replied by Cindy1 on topic Brain bleed
Hi Scott, So sorry to hear you are going through the low platelet and headache situation! Have they done a CAT scan? That is what they did to me the first time I went down to 7,000. I did not even have a headache.
Have you had a bleed before? If so, is this what it felt like? Has your doctor suggested any tests to check it out?
Last time I was down at 2,000 (I messed up no one should get that low)...I had blood blisters in my mouth but no nose bleeds. And I got a nagging front of forehead pain that had me worried but then it went away. I was scared and I can imagine it is very scary for you. Sending good thoughts your way. Cindy
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