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Anyone taking ruxolitinib for mylofibrosis? Please lets talk?

Responses (7)

JERRY-JOY 21 Jan 2012

Yes I have been on the drug over a year. Great results.

rdjhome 23 Oct 2013

Hello Jerry-Joy
Thanks for replying. I live in Australia and the drug is still on the approval list
What sort of results are you getting ?

cheridiane 17 May 2013

My husband now has mylofibrosis which mutated from polycythera vera. He has been taking Ruxolitinib for about 12 months. He takes 20 ml twice a day. So far he is responding extremely well with the medication. His spleen is slowly reducing in size. The only side affect seems to be skin outbreaks on his face, neck and head. Because the drug is not available in Australia it has to be sent to us from the USA and we need to travel 840 ks return to the hospital to pick up a months supply. His specialist does not seem to know what is causing the skin outbreaks and all sorts of creams and potions seem to have no affect.
I would appreciate hearing of your experience. Cheri

aliveandhappy 15 Jun 2013

I have been on Ruxolitinib for 5 years now. I have also been having
breakouts on my face (especially around the mouth) and in my scalp.
At one point, my hematologist gave me a prescription for some pill-form acne medication and that cleared it up for a month but came back. The medication made me very light-headed though. I have noticed that whenever I have required an antibiotic for an infection and have taken levaquin; my compexion clears up as well as my scalp. I would love to find a permanent
solution though. Joyce

rdjhome 22 Oct 2013

Hi Cheri I am in the same situation as your husband and have just stopped a trial drug which did not work very well and wish to try Ruxolitinib Would you
mind telling me some more information about how he is going and the cost involved Robert

kkurtz 5 Feb 2015

Hello, I started on Ruxolitinib (Jackafi) yesterday. I am 55 yrs old, male, and I live in the USA. My spleen is up to 21 cm. I was diagnosed with ET in May '09 and it has now transitioned to ET. I will update this site with how the medication works for me. I hope everyone is hanging in there! Stay positive! Any inputs anyone? Thanks
-KK

Rondonc 2 Jun 2015

I have been on Ruxolitinib now for almost 2 years except for a 5 week holiday due to low platelet count. I started with PV in 2000 and had been on Hydroxyurea until 2013. During that time I had really bad ankle ulcers which was dealt with by my GP but they were never linked to Hydroxyurea until I discovered myself by researching the net that ankle ulcers were a side effect. To my consultants credit, once he was aware, he took me off Hydroxyurea and I had a trial with Anagrelide which made me feel quite ill.
I then had another bone marrow biopsy and it was decided that my condition had mutated to Myelofibrosis

sarah87mf 20 Jun 2015

Hi

This post is 3 years old now but thought I'd reply anyway incase someone sees it later on like I have!

I'm 27 from the UK, diagnosed officially with MF 4 months ago after seeing the haematologist for a year and several BMBs to determine if I had PV or MF. I started in jan15 with Hydroxycarbamide but after 3 months was put on Ruxolitinib/Jakavi I have so far experienced greasy face & scalp - spots breaking out like crazy - constipation & uncomfortable stomach at all time . X

kkurtz 22 Jun 2015

Hi, I am updating my original input. I am 55 yr old male, diagnosed with post ET MF. I have been on Ruxolitinib since Feb'15. My spleen has shrunk quite a bit ; I am not aware of it any longer, as I was before starting the Ruxolitinib. I am having no side effects that I am aware of. I had a follow up bone marrow biopsy 1 week ago - I'll get to see the results tomorrow. I take 30 mg a day. I guess the only negative thing I have to say about Ruxolitinib is that it is extraordinarily expensive!

Rondonc 22 Jun 2015

I am on 15mg Ruxolitinib and feel quite good for my age (80).
It is extremely expensive but being in the UK, is paid for by the Cancer Fund.

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