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TOPIC: Started Promacta February 2017

Started Promacta February 2017 4 months 6 days ago #66519

  • mrsb04
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Still taking Eltrombopag 50mg & Pred 2mg on a daily basis. Count is was 59 at last check 3 weeks ago now it is 30. No change to meds recheck count next Monday

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Started promacta February 2017 3 months 4 weeks ago #66589

  • mrsb04
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Platelet count is 50

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Starting Promacta tonight. 3 months 4 weeks ago #66591

  • Lman
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Good luck :)
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Started Promacta February 2017 3 months 2 weeks ago #66698

  • mrsb04
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Count was 68 yesterday. Haemo suggests I recommence Pred taper by dropping to 1mg/2mg on alt days, retesting platelet count in a month.
I've started at 1mg/2mg/2mg this morning for a couple of weeks.

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Started Promacta February 2017 3 months 2 weeks ago #66699

  • MelA
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That's good new - hope the taper goes smoothly!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Started Promacta February 2017 1 month 2 weeks ago #67178

  • Margaret k
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I haven't posted for a while as I have been lucky to be stable around 100 on 6x 25 mg and 1x 50 mg eltrombopag since April 2019. Need to work on my haema to drop the last 50 to a 25 when I see him later this month. I feel really happy with this as 3.5 years ago I was a seemingly hopeless case;pancytopenic with platelets at 1 ,white cells at rock bottom, anaemic and suffering from a necrotising gum infection. All that gradually changed thanks to returning to eltrombopag 75 mg daily. To be stable on just 25 mg daily would be a great achievement. What a mystery this illness is , but my experience shows that we should never be pessimistic about the possibility of improvement, even when things seem at their worst.

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Started Promacta February 2017 1 month 2 weeks ago #67184

  • Margaret k
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I just worked out that it has taken 13 separate reductions of 25 mg per week each time for me to have come down gradually from 75 mg daily to almost 25 mg daily, over 3.5 years. In that time after having built up to a count of 150 in the first 6 months, I have never been below 90 and only above 150 briefly, always coming down with the small dose reduction.It was just as well I stayed at about 100 , given that I had to have two major operations last year. fortunately nothing seems to lower my count, not illness or stress , ( and I had a lot of stress last year) alcohol or foods. Fingers crossed things continue this way.

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Started Promacta February 2017 1 month 2 weeks ago #67186

  • mrsb04
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I hope so Margaret. I'm still on 50 mg a day.

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Started Promacta February 2017 1 month 2 weeks ago #67189

  • Lman
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Ann-
after almost 5 years of having itp, have you observed any improvement in your platelet counts or reduction of your symptoms? or everything is same (or even worse) as the first day?

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Started Promacta February 2017 1 month 2 weeks ago #67192

  • Hal9000
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75mg to 25mg is quite a journey Margaret. Thanks for the good news. Before Promacta and Nplate, ITP must have been a much bigger challenge then it is today. I know I can get by with just Danazol. But what about folks that just respond to Promacta/Nplate only? ITP must have been hell on earth if one has bleeding symptoms.

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Started Promacta February 2017 1 month 2 weeks ago #67201

  • mrsb04
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Lman
About a year ago I wrote "Asymptomatic apart from accidental bruises around 30. Once count below 30 start to feel cold. Below 20 tired with unexplained bruises, below 10 blood blisters in mouth. "
This had always been the case. However in February I had a slight nosebleed, asymptomatic with count of 32. Never had a nose bleed before.
In April I had a major nosebleed & discovered count was 8. I was completely asymptomatic at that time & had no idea my count was in single figures.
Now my count is 40 and am covered in bruises from gardening bumps and scrapes.
Anne
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Started Promacta February 2017 1 month 1 week ago #67221

  • Margaret k
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I hope you soon become more stable Mrs B. After an initially good response to eltrombopag 50mg in 2012 I had a period in 2014/15 when my response deteriorated to about 10 on 50mg resulting in ineffective changes to Nplate and Rituximab when I fell right down to 1.It was very stressful as I too had nosebleeds and many bruises. It was a mystery why my count dropped and then another mystery why it slowly increased again in response to being put back on eltrombopag at 75 mg.
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Started Promacta February 2017 3 weeks 1 day ago #67371

  • Margaret k
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As my count today was 158 I have to celebrate now being on only 25 mg 7 days a week. Next check in 6 weeks. Fortunately Hal my itp arrived as Eltrombopag was becoming more readily prescribed in Scotland. As I had no response to steroids or ivig and sequestered platelets in my liver Eltrombopag was given to me about 6 weeks after diagnosis. I had a dip in responsiveness in 2015 and was also unresponsive to Nplate and Rituximab then. Returning to Eltrombopag at 75 mg daily worked gradually and the dose was gradually reduced in line with my increasing counts till I reached this point. If my count goes above 150 I expect to reduce further .

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Started Promacta February 2017 3 weeks 1 day ago #67373

  • mrsb04
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Great news Margaret. I'm holding between 40 and 50 on 50mg. I'm happy with that. I'm down to 1.5mg a day of Pred so light at the end of the steroid taper tunnel.

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