Good news Ruxolitinib: Husband this time last year... - MPN Voice

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Good news Ruxolitinib

waddles22 profile image
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Husband this time last year was crawling up the wall with itching all over pruritus terrible. Diagnosed eventually after 12months with JAX_2 mutation positive: PV . So July 2017 after Haematologist had tried everything possible it was decided that he would be able to have Ruxolitinib!!! Now take 15mg twice a day. Itching completely controlled feeling really well. He has had excellent treatment from his Haematologist and they constantly monitor him.. Many many thanks to the NHS

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waddles22
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bordeauxgirl profile image
bordeauxgirl

Hello waddles22, I too have PV jax2+ and on top of that Puritus with associated an itching rash that drives me nuts and is very sore as well. My Haematologist seems very unconcerned at the moment and he actually calls it mild. If only he knew what it feels like. He has not yet suggested changing to another med and I have just to stick to Hydroxycarbamide. Four years on since diagnosis, I don not live on mainland uk and only see the doc from England every 8 weeks at the moment but normally it has been every three months. The itching has woken him up that my condition might be changing so has ordered an Iron infusion plus another BMB. So good luck with your new treatment and I do hope you carry on improving.

JediReject profile image
JediReject

Hi Waddles, , it's a fact our NHS takes some beating, it's certainly come through for me in the last few years.

Anyway regards the itching which I must say is often under estimated by those who haven't suffered. I had MF and for years had the dreaded itch. I recall taking a shower in the early days and shortly after the reaction began. It felt like being bitten by thousands of red ants and reduced me to tears. I'm not ashamed to say that because it illustrates the severity.

But along came Ruxolitinib and my life changed in terms of being able to bathe and shower freely . . It was a revelation.

I don't know why we itch like crazy with MPN but it's obviously blood related. I'm glad your hubby has finally got some respite from it as it's a nasty symptom at its worst.

Good Luck - Chris

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