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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (273)
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@mags17

I have been diagnosed with PV Jak 2 mutation, 2 years ago this month, started off with blood letting then moved on to Hydrea which doesn't at all agree with me. Bottom line is I am now on a reduced dose of Hydrea..3 days per week instead of 7 days & blood letting only if my HCT is over 45.. One monthly blood tests at the moment. With regard to your Jak 2 query, will leave that one to an expert to answer!
Don't know you or anyone else noticed today a message which popped up on this website which said 'Good news or something to that effect for PV sufferers!
There was a link underneath which I clicked on, it brought up a Registration option, but the drop down menu indicated that it was applicable to only to Medical Personnel! Link flew off the screen, couldn't retrieve it.
If for Medical only, due to the fact that I have that condition, I got a let down when I saw I couldn't be party to the good news! Just wonder🤔

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Replies to "I have been diagnosed with PV Jak 2 mutation, 2 years ago this month, started off..."
Lori, Volunteer Mentor | @loribmt | Jul 23, 2023

Hi @mags17 Unfortunately there is a professional registration necessary to get into the Medscape…however, I found a way for you to be party to the good news. ☺️

Here are some links to the medication referred to for the treatment of Polycythemia Vera. It’s still in trial testing but showing favorable results!
Rusfertide:
Info about ongoing testing and results
https://www.onclive.com/view/rusfertide-improves-responses-meets-primary-end-point-of-revive-trial-in-polycythemia-vera

Few more earlier articles about Rusfertide:
https://ashpublications.org/ashclinicalnews/news/5878/Rusfertide-Leads-to-Hematocrit-Control-in-Patients

https://www.cancernetwork.com/view/clinical-hold-on-development-of-rusfertide-removed-by-fda

How are you feeling now that you’re down to HU 3 times per week? Experiencing fewer side effects?

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