Ruxalinitib for MF2

[artydutch]

I would love to hear anyone’s experience with Rux. How soon did you notice a difference? Which were the most obvious side effects?

How low did they allow platelets to go and other bloods, before dose adjustments or transfusions?

Any replies much appreciated!

[Sherpa8]

Hello. I have been on Rux for 19months now. I noticed a difference within 3 days ! Puritus ceased. That for me (along with fatigue) was the worst symptom alleviated. My Spleen is 17cm and that hasn’t changed in the time I’ve been on Rux. I’m 5ft and my extended stomach is noticeable. I’ve had to buy bigger clothes, quite distressing!

First 6 months on it 20mg x 2 increased fatigue then migraine.

Dropped down to 15mg x2 daily. Fatigued stabilised. Platelets dropped from 900 to 700 to 130 ish in the 19 months.

I was put on EPO injections last Autumn , 1x week. As I was anaemic (RBC 92) & fatigued . They have helped. RBC now 108 ish. That works for me. No transfusions so far 👍🏼

[lizzziep]

I’ve been on Rux since November. I was very anaemic before I went on it. I had a few transfusions at first but once hg got over 80 they stopped. I also have EPO injections twice a week. Hg hovers around 85, feel tired, that could be age related as well as nearly 71! I started on 20 mg twice a day, this was put up to 25 twice a day for a month but back to 20 as platelets dropped to 160. Don’t think spleen has gone down but not had a scan. Otherwise ok! Other blood counts in normal levels.

[JP1952]

I have been on Rux for nearly 3 years. Pruritus stopped within 2 days although the burning sensation in my legs has never gone away, but fatigue has continued to progress. All my bloods are low except for platelets which have never gone under 400. I take 25/20 mgs on alternate days, a higher dose make me too anaemic and lower dose the itching was threatening to return. I have never had any injections or transfusions. I am 5' 4" and weigh almost 10 stone so have gained over half a stone, mainly on my stomach, I think a lot of this is because I am unable to burn calories like I used to.

[LFCLove]

Hi, I started Ruxolitinib on 19th October 2023. It has stopped the itching (Pruritus) within a week, night sweats almost immediately and has also shrunk the spleen which means I am able to eat more to put back the weight which had been lost. Initially dosage was 5mg twice a day but this was increased to 20mg twice a day after visit to Guys Hospital on 21st November 2023.

🤓

[Scaredy_cat]

I was on Ruxolitinib in 2022. My spleen was large like yours. It may have shrunk a bit but I was unable to raise the dose of the rux as my platelets were becoming too low. I was then shifted to fedratinib. I've now had a stem cell transplant so not needed anymore.

[tracey13]

Hi my husband started ruxolitnib in Feb 2019. He had an enlarged spleen 23cm it's now back to normal size.

He takes 20mg morning and night he noticed a difference after two weeks the extreme fatigue was a lot less .

After about a year all his bloods are in normal range now he's been stable now since 2020.

We are praying this medication will continue to work for him he was 41 when diagnosed with PV after around 4 year he progressed to primary MF.

He's not had any more BMB his consultant said the blood test would show if things get worse and while they remain stable that's a good sign.

He's never had any side effects from ruxolitnib which is great.

Hydroxy made him iron deficient which made him so ill .

Ruxolitnib has been a life changer for him.

He will be 52 this year.

Hope this helps

Tracey

[sbs_patient]

I've been on Jakafi for about 18 months. Initial dose was 10 mg twice a day; this caused anemia, so I'm now at 10 mg once a day. Blood count numbers have been stable for more than a year: WBC high but stable, RBC and HGB a bit low, platelets slightly elevated but stable. Night sweats are gone, and spleen is no longer palpable. The only significant side effects have been GI: an exacerbation of the irritable bowel syndrome that I have been dealing with for more than 50 years. This is annoying but manageable.