Started Rux

[Arami]

Hello All, I am a 75 year old guy, diagnosed with MF two years ago, and been on 1 Hydrea 500/ day since. In May my dr convinced me to switch to Rux. We are still trying to find the right dose - from 15 mg twice a day I am now at 10 mg twice a day. - but my numbers are way off, much worse than when I was taking Hydrea. - leucocytes are up to 35, platelets down to 37 and I am very close to severe anemia. Dr tells me that this is normal at the beginning of the treatment with Rux and that numbers will start to improve. Did anybody experience this? Will it get better? I am starting to regret the switch. Thank you in advance!

[lizzziep]

Hi, I’m 71, in the UK, been on Rux since November. It took a couple of adjustments to get the right dose, I’m on 20 x 2 a day. The only side effects I’ve had is rapid weight gain 😱

I was anaemic before going on it and still am, I have self administered EPO injections twice a week to help with that. At my check up the other day my haemoglobin had stayed the same as last month for the first time so staying on this dosage, but doctor is considering Momelitinib in the future. My other counts including white blood cells and platelets are in normal levels.

[JP1952]

Hi, I am 72 and been on Rux for 3 years after 2 years on Hydroxy.

I started on 15mg twice a day and all my blood counts plummeted apart from my platelets which went up. I was also dizzy a lot of the time. So for the first 18 months my dosage was continually altered, too much and I was anaemic and dizzy, too little and the itching returned. However, for over a year my bloods have been stable although all on the low side and platelets hovering between 400 and 500. The dose is 20mg/25mg on alternate days, taking 2 x 5mgs each evening and alternating the 2/3 x 5gms in the morning. One haemo stated he had never seen such an unusual dose but i had great difficulty splitting a tablet. It is not ideal but it’s OK, I just don’t want the itching to return.

[ainslie in reply to JP1952]

I split my pills with a pill splitter, have you tried them

[JP1952 in reply to ainslie]

Sorry. I didn’t word that very well. What I meant was it’s not ideal for my bloods to be continually low not splitting of pills a problem. The 2/3 alternation works OK in that my bloods have been consistent for well over a year, and no itching.

[ainslie in reply to JP1952]

Congratulations on sorting the itch, Rux certainly did that very well for me

[Scaredy_cat]

I too was on ruxolitinib but platelets were too low ( nothing like as bad as you) so was switched to fedratinib. Since then there other approved drugs like pacritinib and momentalib which aren't so harsh on various other blood cells. Ask the haematologist or get them to confer with mpn specialist.

[Meatloaf9]

Hi, I think anyone with a diagnosis of MF should be followed by a MPN Specialist, if possible. Best to you.

[sbs_patient]

I was diagnosed with PV in 2015 (then aged 71); first treated with phlebotomy, then HU, and now Rux, starting in 2022. My initial dose of 10 mg twice a day lowered platelets and HCT but caused anemia. Lowering the dose to 10 mg once a day cured the anemia while still leaving platelets and HCT numbers in the target range. However, my PV symptoms (blood count numbers are still OK) have worsened a bit lately and my MPN specialist wants to try 10 mg AM and 5 mg PM; we'll see how that works out for me.

[ainslie in reply to sbs_patient]

I think that’s the only case I have heard of Rux being once a day, usually twice a day 12 hours apart. If 10+5 is too much you could split the pills to give you 10+2.5 or better 7.5+5, I always try to split total dose so am and pm is same.

[sbs_patient]

Yes, I was aware of the recommendation for AM and PM dosing. However, since the AM dosing has been working for me for 18 months or so (and was recommended by my MPN specialist), I didn't feel inclined to change it. If 10 +5 doesn't work for me, I will certainly experiment with pill splitting as you recommend.