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Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm

  • Oumamarda@gmail.com
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6 years 11 months ago #65156 by Oumamarda@gmail.com
Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm was created by Oumamarda@gmail.com
Hi all. I have been under treatment for 2 years. Cortisone, polygam, Mabthera and currently N plate for the 6th week already. Platelet count only 2! Will the removal of my spleen help at all?
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6 years 11 months ago #65157 by CindyL
Replied by CindyL on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
Not necessarily. But not every treatment works for everyone. It didn't work for me, but it might for you. I'm sure others will chime in too.
Good luck!
  • 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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6 years 11 months ago - 6 years 11 months ago #65158 by mrsb04
Replied by mrsb04 on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
oumamarda
Don't get too disheartened. As Cindy says different people have different treatment responses. Steroids bump my count up when I'm on high doses but obviously that is not a long term treatment option. I had 4 different second line treatments over the first 3.5 years before I tried Eltrombopag aka Promacta or Revolade depending on the country you live in. I've been on it now for over 18 months.
I still have my spleen. A perfectly healthy organ doing its job properly I'm not parting with it. There is no guarantee a splenectomy will work. It is too big a risk to take as far as I am concerned.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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6 years 11 months ago #65159 by midwest6708
Replied by midwest6708 on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
If you've only been using NPlate for 6 weeks, you might not yet be anywhere close to the highest dose possible. If it doesn't have any effect once you reach the maximum allowable dose, it would be time to give up on it.

I take NPlate. It almost works too well for me, in that I can't maintain a dose that will give me a consistent 50 count. Count is usually too high. We're all different.
  • 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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6 years 11 months ago #65165 by Sandi
Replied by Sandi on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
Splenectomies do not always work and are becoming more obsolete as an option. I know it's frustrating, but hang in there! Does N-Plate get your counts up at all? I'm asking because it will usually get counts up for a few days and by the time you need another injection, counts are already back down. Sometimes it takes more than six weeks to work...what dose are you on?
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6 years 10 months ago #65259 by packh1@yahoo.com
Replied by packh1@yahoo.com on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
Sandi,My hematologist told me they are straying away from splenectomies (as you said).I had mine out and it helped for only 6mo.
tricia50
  • 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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6 years 10 months ago #65281 by Sandi
Replied by Sandi on topic Good day , I am utterly confused. Have been on treatment for 2 years now. Treatm
I'm sorry to hear that.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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