Getting used to Rux

[Graham7694]

Well I started on the Ruxilitinib on Monday. 20mg twice a day. I am having waves of fatigue - generally if I sit down for an hour they pass. I was tired before but this is something else. I know it is only day 3 but am hoping someone would tell me that my body will get used to it soon......

[mikerodol]

Hi Graham

I have been on ruxo for 18 months now. Feel a lot less tired than before starting it. Tiredness will be worse to start with as ruxo does initially decrease hg levels but this should improve after 8-12 weeks. Also I don't know your medical history but the recommended starting dose is 15mg twice daily, increasing to 20mg twice daily after 3 months if bloods especially platelet levels are ok. Maybe starting on 20mg increased the tiredness.

Hope this helps

[jane13]

i started on different dose - i think starting dose gets varied dependant on base level of counts. initially a fair amount of fluctuation in my counts, so dose altered again within 4 weeks, now on 10mg x2. I felt fab after that, tiredness vanished, though i am afraid the effect didn't last in my case. good luck

[pj1963]

Hi Graham

I also started on 2 x 20mg a day, about 18 months ago, but quickly felt tired. At the next appointment (I can't remember how long after - probably 3 weeks) I was found to be anaemic, and the dose was reduced to 2 x 10mg a day. I've felt much better ever since. Rux apparently does start working quickly, so I wonder if you should call your haematologist/nurse specialist and arrange for a blood test with your GP to check how things are going?

Let us know how you are.

Paula

[Graham7694]

My platelets are running around 820 so that is why they started me on a high dose. My feeling is that if I can get through the next few weeks then they will probably reduce dosage down. Just finding it hard at the moment especially with being self employed. Hopefully it will settle down a bit by the weekend 😀

[RosemaryHarper]

Have been on Rux 20mg twice a day for 3 months and feel so much better than I ever did on Hydroxy (had about every side effect going!) Hang on in there and I'm sure your body will adjust and you will get your life back. Best of luck

Rosemary

[Norman45]

I started on 20mg twice daily two years ago and while I felt well initially within three weeks hit a brick wall. Sleeping twelve hours a night with an afternoon nap of 2/3 hours and desperately fatigued all the time.

Wrote an email to the consultant who had prescribed Ruxolitinib and she told me to halve the dose. This rapidly brought me back to a feeling of near normality and this has been the case ever since.

A quick word with your consultant might be beneficial.

[Graham7694]

Just a quick update - have been drinking far more water and am feeling a whole lot better on the Rux 😀