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High platelets, Jak2, ET, and pre-fib new diagnosis

Posted by mortysdad @mortysdad, Nov 16, 2022

Just was diagnosed and had a bone marrow biopsy yesterday. Going on Pegasys...anyone traveled this road before me? I'm 67 and new to all this, thx!

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eileen11108 | @eileen11108 | Jan 5, 2023
In reply to @cowestwinds "Thanks Eileen. I had terrible mouth sores with HU and went off for about a month..." + (show)
@cowestwinds

Thanks Eileen.

I had terrible mouth sores with HU and went off for about a month until I could get them under control. My platelets went back up to 520 but stabilized there. I went to a MP specialist and said I could drop to 500 HU a day, but because of my complications and also the fact that I have a problem with basil cells and possible skin cancers that he wants me to go to Pegasus. Waiting to see if insurance will cover.

What I did learn is that studies have shown that the numbers don't matter as much as the fact that we have the Jak2 mutation. Just having the mutation can lead to the clots, etc. So while you obviously don't want the numbers to go crazy high, you don't need to go crazy with the drugs to try to get them down into the 400's. Very interesting.

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I was really interested in what your MPN Specialist had to say. I also have had several basal and squamous removed. I will discuss with dermatologist and hematologist.

I am 78 and on a blood thinner as I have paroxysmal AFib. in June 2022 Hematologist started me on 500 mg HU every day. I had daily headaches so she stopped me for a month, Then I was put on 500 mg every other day. Platelets are still dropping, headaches but I can tolerate them, My platelets are down to 434 so I can continue every other day.

My research indicates that all ET JAK2 treatments have side effects.

Good luck with your Pegasys treatment. Eileen

REPLY
mortysdad | @mortysdad | Mar 25 3:09am
In reply to @colleenyoung "Hi all, I thought you might appreciate these related discussions: - Essential Thrombocythemia: Looking for information..." + (show)
@colleenyoung

Hi all, I thought you might appreciate these related discussions:

- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- People living with ET and taking Hydrea: Anybody setting records? https://connect.mayoclinic.org/discussion/anybody-setting-records/
- I have JAK2 ET and MPN: Anyone else have these symptoms?https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/

@mortysdad, in the title of this discussion you state "High platelets, Jak2, ET, and pre-fib new diagnosis" What does pre-fib mean?

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Wow. I'm terrible at this posting stuff I guess. I just saw that you had asked what pre-fib was. It was pre-fibrotic on my bmb. From what I understand, myelofibrosis is not what you want ET to progress to. I also was found to have another Asxl1 mutation that can morph into AML. Also not wanted as you well know. Thx!

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jola13 | @jola13 | Apr 5 1:49pm

SAME HERE DIAGNOSED LAST YEAR - ON TOP OF ALL MY OTHER HEALTH PROBLEMS - IN CONSTANT BONE AND NERVE PAIN - MIGRAINES FROM HELL ON HYDREA AND ASPIRIN - BUT STILL SMILING OH AND IM 67 TOO!

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