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.
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.
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.
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 314
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.
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.
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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