Was my Jakafi dosage lowered inappropriatelyand ... - MPN Voice

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Was my Jakafi dosage lowered inappropriatelyand need to be raised?

Boriqua profile image
5 Replies

I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down. Now I feel so much heat in my body that I can't tolerate it anymore feel like I am burning inside and they have no clue about what I am saying. I am pretty sure it is due to the lower dosage.

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Boriqua
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Rachelthepotter profile image
Rachelthepotter

Rux dosage to be reduced very slowly or else you can get a nasty rebound effect. Look at the patient information insert. Do talk to your haematologist or nurse specialist as soon as you can.

Boriqua profile image
Boriqua in reply to Rachelthepotter

Rachel thanks for taking the time and responding, I hope you doing ok.

socrates_8 profile image
socrates_8

Hey... Boriqua :-)

Have to agree with Rachel...

There is a thing called: Ruxolitinib Withdrawal Syndrome (RWS), and reductions need to be made slowly over months until one stabilises, and especially so if you have been on Ruxolitinib for an extended length of time...

Definitely speak with your Haematologist asap, because while RWS might well be the culprit, it could also be something else entirely...

Best wishes

Steve

(Sydney)

Boriqua profile image
Boriqua in reply to socrates_8

I definitely going to check into thankyou.

Boriqua profile image
Boriqua in reply to socrates_8

Thanks Steve, hope you doing ok.

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