Ruxolitinib

[S031251]

Hi all I hope your all keeping safe and are well despite shielding and all the isolation It brings.

I was just wondering if anyone with PV and on ruxolitinib who experienced horrible itching before taking it has found that it is coming back despite blood counts normal. I’ve been in it for 18 months

Anna x

[IainF]

I've been on Rux for about 4 years now but do take a lot a day (9!) as my symptoms were very bad and it's taken ages to find the right level. Thankfully now my symptoms have largely been controlled - still get the occasional flare up but nowt too bad - and itching was one of the problems. Sometimes it will take time to find the level of medication you need, if other symptoms are creeping back might be that you need slight increase in your dosage - it's what has happened with me.

[S031251 in reply to IainF]

Thanks for your reply my counts are stable at the moment so just hope the itching doesn’t get any worse and no doubt if it does the dosage could be upped

Stay safe

Anna

[crapaud]

Unfortunately I am not able to really help.

Although I was on Ruxolitinib it was to combat my gvhd rejection issues following my SCT.

My personal itching problems at the beginning of my illness (MF + MDS) before I had my transplant were greatly relieved by my Pegasus treatment.

Good luck

Gary

[S031251 in reply to crapaud]

Thanks Gary

[MamPRV]

Hi Anna. I’ve been on Rux for 9 months now. Within weeks my itching stopped but over the last couple of months it has returned to a mild itch just after showering. My blood levels are also stable .

Michelle xx

[skodaguy]

I have been on rux for MF after having PV for nearly 6 years. Found it dealt with the itching very well initially but in the last 18 months the itch has returned. I find taking fexofenadine 180mg/day helps a lot and rarely get severe itching any more.

[S031251 in reply to skodaguy]

Thanks Michelle and Skodaguy

I at least feel that I’m not alone - rux got rid of my itch and all it’s associated symptoms so quickly to begin with - just really wanted to know if this was not just me - in the past fexofenadind 180 made no difference - I’m happy if it doesn’t get any worse

Keep well and safe

And thanks

Anna xx

[Big-Ted]

Thankyou so much for your replies guess I will have to wait and see ,really need to get my platelets down.