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TOPIC: Treatment route advice

Treatment route advice 9 months 3 weeks ago #68036

  • Bakes1969
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Hi. I have literally joined this forum ten minutes ago as I have some big decisions to make. I was diagnosed with ITP in August 2017. I was covered in bruises. Asked by doctor for a blood test and 8 hours later was in the emergency department at the hospital. Was on prednisolone steroids for some months. I didn't respond to the steroids and was taken off them slowly. Have been monitored closely ever since. Platelets a month ago were 14,000 but no symptoms. Because I had no symptoms I was just being monitored on a fortnightly basis. However, I then had a sore throat and within 36 hours this had developed into pneumonia and sepsis. My platelets then went to 6,000 which was again treated as an emergency. I received an IV transfusion of immunoglobulin antibodies and put back on steroids. My platelets went up to 278,000 which is the highest they have ever reached. (normally hovering around 20,000). However the IV transfusion only lasts a short time. From experience, we know my platelets are going to drop again and my haematology consultant has now suggested (as steroids don't sustain my levels and I have a lot of side effects) that as soon as my platelets drop to 50,000, I should go on either Romiplostim (Nplate) which is a weekly injection or Eltrombopag which is a daily tablet. I have researched both and both sound awful for side effects. One damages my liver and the other damages my bone marrow, both seem to cause many other side effects which sound like a day to day battle. I wonder if anyone on here can let me know if they are on either drug and how they are affected by it. Thank you and I look forward to hearing from some of you who may be able to help me decide which route to take. I am seeing my consultant on 6th December when we are going to start which ever course of medication I have chosen. I have no idea what to do.....

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Treatment route advice 9 months 3 weeks ago #68039

  • JJ
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The side effects on both those drugs are rare and if they do occur stopping the drug resolves the issue.

You may want to read the new guidelines just out in order to assist your decision. The link below appears to work even though it looks odd.

ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the
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Treatment route advice 9 months 3 weeks ago #68043

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Bakes 1969

Read the new guidelines, I wish they'd been around 5 years ago. Very informative, discusses side effects of meds too. Well presented and referenced. Also the link below is useful. It's based on the previous guideline but written in a well presented manner. It was produced by ITP nurses for nurses who know absolutely nothing about ITP. i.e. me 5 years ago.
www.ebmt.org/sites/default/files/migration_legacy_files/document/EBMT%20Practical%20Guides%20for%20Nurses_Immune%20Thrombocytopenia_ITP%20Handbook_UK.PDF
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Treatment route advice 9 months 2 weeks ago #68070

  • Hal9000
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Bakes1969 wrote: Hi. I have literally joined this forum ten minutes ago as I have some big decisions to make. I was diagnosed with ITP in August 2017. I was covered in bruises. Asked by doctor for a blood test and 8 hours later was in the emergency department at the hospital. Was on prednisolone steroids for some months. I didn't respond to the steroids and was taken off them slowly. Have been monitored closely ever since. Platelets a month ago were 14,000 but no symptoms. Because I had no symptoms I was just being monitored on a fortnightly basis. However, I then had a sore throat and within 36 hours this had developed into pneumonia and sepsis. My platelets then went to 6,000 which was again treated as an emergency. I received an IV transfusion of immunoglobulin antibodies and put back on steroids. My platelets went up to 278,000 which is the highest they have ever reached. (normally hovering around 20,000). However the IV transfusion only lasts a short time.

Ok, well let see. You don't respond to steroids alone. With steroid and IVIG treatment counts go up to a very respectable 278, but only lasts a short time. A (not so big) stab in the dark question. Do you do a lot of exercise?

From experience, we know my platelets are going to drop again and my haematology consultant has now suggested (as steroids don't sustain my levels and I have a lot of side effects) that as soon as my platelets drop to 50,000, I should go on either Romiplostim (Nplate) which is a weekly injection or Eltrombopag which is a daily tablet. I have researched both and both sound awful for side effects. One damages my liver and the other damages my bone marrow, both seem to cause many other side effects which sound like a day to day battle. I wonder if anyone on here can let me know if they are on either drug and how they are affected by it. Thank you and I look forward to hearing from some of you who may be able to help me decide which route to take. I am seeing my consultant on 6th December when we are going to start which ever course of medication I have chosen. I have no idea what to do.....

To be specific.
Both drugs can damage ones bone marrow. But they will test your blood regularly for bone scarring/fibrosis and stop the drug if it becomes a problem.
Eltrombopag does raise one's liver enzymes (ALT/AST). But as above, they will test your blood regularly and stop if liver enzymes become too high. Usually this is a pass/fail sort of thing when the drug is first started. Either there is a big liver impact or there is not.

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