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Promacta and Myelofibrosis 1 year 7 months ago #67589

  • adamt
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Just wondering if pormacta users have any worries about the long-term side effects that promacta/Eltrombopag might have? Specifically myelofibrosis. I've had a very good response with this promacta/Eltrombopag and had no side effects so far. I've had both steroids and IVIG with zero response. So promacta almost seems too good to be true. I am however worried about the possible long term side effects.

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Promacta and Myelofibrosis 1 year 7 months ago #67592

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Adam
I know exactly where you are coming from. I've been on Eltrombopag for over 2 years.
I get regular blood tests which so far have not thrown up any worrying symptoms.
You may find the article below of use. It discusses several papers looking into the topic. You're also in the UK so you should be able to access it.
www.emjreviews.com/hematology/article/eltrombopag-induced-myelofibrosis-in-patients-with-adult-immune-thrombocytopenia-scoping-review/
The following user(s) said Thank You: adamt

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Promacta and Myelofibrosis 1 year 7 months ago #67593

  • adamt
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That was the article that made me worry a bit about the potential long term side effects. As it looks like there is no long term information about the effect of the drug. The study also doesn't mention what doses people took or if the drug was administered properly. I know in my case it wasn't administered entirely correctly. I haven't been tested as frequently as the manufacturer recommends. The NHS has some new electronic system in place and blood tests seem to be much more difficult to arrange. Last time I had ITP I was just given some blood test forms and told to come in every week or the day before the appointment. This time round, tests are monthly or sometimes every 3 months. Definitely not an improvement from the perspective of a patient/doctor who needs up to date information not to overdose the patient.

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Promacta and Myelofibrosis 1 year 7 months ago #67595

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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The references at the bottom of the article point you to more detail. I know one of the papers says initial 50mg doses up to a max on 75mg.

My hematology dept still uses paper forms, than goodness, I have months bloods, FBC, LFT, U&Es and CRP.

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Promacta and Myelofibrosis 1 year 7 months ago #67607

  • Hal9000
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Oh that is one comprehensive study. First time I have seen it myself. That fibrosis can be permanent is news to me.

Previous conversations I've read here have suggested that a blood smear can detect fibrosis. Further, that fibrosis will show up as a slow decrease in counts over many months. And that doses >= 50 is when fibrosis becomes a more likely possibility.

Are you taking 25 or 50mg adamt?

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Promacta and Myelofibrosis 1 month 5 days ago #71036

  • sseiler
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Hello,
Old topic, but I just read this. I'm on Promacta 25 mg Tues, Thurs, Sat and 50 mg Mon, Wed, Fri, Sun. I am low stable at 40-50. I've been on Promacta for about 4 years. I got a bone marrow biopsy done in 2017 and, since starting Promacta, I get them annually. I was concerned about developing bone marrow fibrosis which is an acknowledged side effect of Promacta. Bone marrow fibrosis is defined by the deposition of reticulin fibers in the bone marrow stroma. Bone marrow fibrosis is graded - European consensus from 0 to 3. I have consistently measured 1 with mild reticulin fibrosis, including for the first one done pre-Promacta in 2017. I will continue to monitor with annual bone marrow biopsies. I believe bone marrow fibrosis is reversible (e.g., discontinue Promacta, bone marrow fibrosis decreases), but with greater fibrosis, all hematopoesis may be effected. Not a road I want to go down. After my 2017 bone marrow biopsy showed mild fibrosis, I was scared (my hematologist pooh-poohed it) and was evaluated by Dr. Howard Liebman at the USC Keck School of Medicine. He is an incredible doctor who recommended my local hematologist switch me from WinRho to Promacta. WinRho destroys/hemolyzes RBCs when you are Rh positive. The spleen preferentially sequesters the RBCs over platelets which causes the latter's number to increase. My hematologist never ordered a baseline complete metabolic panel with eGFR for me, but when Dr. Liebman ordered one, my eGFR was low for my age. He was concerned that the RBC hemolysis was releasing iron bound to the hemoglobin inside the RBCs, and the iron was damaging my kidneys. He also said it is common for autoimmine patients whose blood cells are effected by autoimmine disease (ITP, Lupus, etc.) to have mild reticulin fibrosis. I also had an eye exam for baseline evaluation of cataracts - another acknowledged side effect of Promacta. My hematologist never told me to get the baseline eye exam, but I researched and became my own patient advocate. No cataract progression beyond age-related cataract presentation. So far then, so good as far as no additional bone marrow fibrosis or cataract development. That's my story - I have learned a patient with a chronic disease must be their own advocate. My hematologist is a hematologist/oncologist, and her bread and butter (so to speak) is oncology patients. She has a number of ITP patients, but she'll never tell me the exact number LOL. I suspect not too many. She's given me incorrect information before, didn't do a baseline complete metabolic profile with eGFR pre-Winrho, didn't discuss my bone marrow fibrosis, and didn't recommend an eye exam pre-Promacta. Dr. Liebman is about a 3 hour drive away, or I would switch for certain...sigh! Thank you, PDSA, for providing these discussion groups. They are wonderful!

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Promacta and Myelofibrosis 1 month 4 days ago #71038

  • adamt
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Just a quick update, I was on 50mg. The count went up pretty quickly after a couple of weeks, due to some clerical issues the dose wasn't reduced gradually and I was taken of Promacta too quickly and my count crashed. We went back to 50mg and the second time around we reduced the dose very gradually. I came off the drug completely 7 months ago and I have had a stable count of 220 since. No side effects, I seem to be very reactive to this particular drug.

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Promacta and Myelofibrosis 1 month 1 day ago #71082

  • sseiler
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You are so lucky! That's an ideal result. I hope you continue to remain stable within average range. Best wishes!

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