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Newly Diagnosed, Need answers

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9 years 1 week ago #56039 by Julier
Newly Diagnosed, Need answers was created by Julier
Please help me understand some of what is Hapending to me. My platelets are continuing to fall even with transfusions. On Tuesday I was at 15,000. I had another transfusion today and also noticed large bruises showing up on my body this scares me and makes me wonder if they have fallen more. I came to Dallas to see a Specialist, my spleen is ok. He has talked of trying Promacta but first is going to do more blood work. I've had bruises but these are really scaring me. All this is happening so fasthat. Can anyone help
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9 years 1 week ago #56040 by tj1989
Replied by tj1989 on topic Newly Diagnosed, Need answers
Transfusion does not help ITP. Your immune system attacks platelets, transfusion only last for short time, and only used for emergency situations. Even your immune system is ok, transfused platelets only live for 7-10 days.

Talk to your specialist, and he may want to do more test to exclude other possibilities.
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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9 years 1 week ago #56041 by D.Mann
Replied by D.Mann on topic Newly Diagnosed, Need answers
I am in the same boat about 1 week ahead of you it sounds like. I spent last weekend in the hospital getting transfusion and IV meds. I am on what sounds like the default first med, prednisone at 60mg. I was down to 5.5k last Saturday. I am now at 39K, hopefully climbing as I type. I am sure Sandi will give you some good advice. I suggest reading thru the posts here, some will help but don't let them scare you. Give the blood doc time.
  • 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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9 years 1 week ago #56045 by Sandi
Replied by Sandi on topic Newly Diagnosed, Need answers
Julier:

Did you have transfusions or infusions? If you've been getting platelet transfusions, they are not a treatment for ITP and will not cause counts to go up. If you are getting infusions, it would probably be IVIG and might take some time to work.

Bruises are common. It happens. I know it's scary, but if you don't have active bleeding like gums, nose, urine, etc., you'll be okay. If you are not comfortable waiting until Monday, you can always go to the ER. They don't always know how to treat ITP though. Has your doctor suggested Prednisone? When were you diagnosed?
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9 years 1 week ago #56051 by Julier
Replied by Julier on topic Newly Diagnosed, Need answers
I was just diagnosed. And my gums started bleeding a few days ago. I've seen two specialist. I also have lupus, since 2000. They have have been giving transfusionso and they aren't working. I'm going back on Tuesday for more testing before he decides what treatment he wants me to go with. Buthe the bruising just starated badly today.
  • 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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9 years 1 week ago #56055 by Sandi
Replied by Sandi on topic Newly Diagnosed, Need answers
Transfusions won't work for ITP. A Hematologist should know that.
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