u/acwoodhome

Hi would love to here from anyone taking Ruxolitinib either short term long term or alternating between Inteferon. My Consultant is suggesting it as Hu intolerant and inteferon which I am currently on looks like it's not controlling Heamaticrit. So between the inteferon venesections fatigue itching irritable and overwhelming feelings am feeling it lol having had no issues for decades. Since starting Hu about 18 months and dropping it like a stone as ended up in a&e twice and starting inteferon alpha 2a 5 months ago I now well an truly feel ill at times lol especially the first two days after the injections then it starts to lift then repeat as on weekly injections. Should I be worried about death by ruxolitinib or give it a go as it might be my last throw of the dice? What experiences do you have on it? Love to hear from you such a great Reddit thread.** 🤗🤗😊😊

Hi would love to here from anyone taking Ruxolitinib either short term long term or alternating between Inteferon. My Consultant is suggesting it as Hu intolerant and inteferon which I am currently on looks like it's not controlling Heamaticrit. So between the inteferon venesections fatigue itching irritable and overwhelming feelings am feeling it lol having had no issues for decades. Since starting Hu about 18 months and dropping it like a stone as ended up in a&e twice and starting inteferon alpha 2a 5 months ago I now well an truly feel ill at times lol especially the first two days after the injections then it starts to lift then repeat as on weekly injections. Should I be worried about death by ruxolitinib or give it a go as it might be my last throw of the dice? What experiences do you have on it? Love to hear from you such a great Reddit thread. 🤗🤗😊😊

Just a shout out to anyone with ET. I was diagnosed with ET over 20 years ago. Platelets were over 450 but not by much. Eventually peaked at 650. I was also tested and found JAK2 positive. Yearly checkup and one Clopidogrel a day that was it a worry but manageable and happy days. Now here’s the rub hematocrit was hovering about 0.48. Right at the upper limit and went unnoticed for decades. Thank goodness long story but after a few consultant changes I get an amazing consultant who decided to ask some really probing questions and looked at my history from day one lots of respect! I explained to her that I had lots of fatigue and itching after a hot shower red flag for PV! She also noticed the hematocrit level although still in normal range was boarderline She insisted on a bone marrow biopsy and here we are I have PV not ET. So a huge shout out to everyone monitor your MPN score check your symptoms regularly MPN score helps in this regard and definitely keep an eye on your hematocrit levels and please don’t be afraid of asking or getting a bone marrow biopsy 🤗🤗

How many of you out there have ever been asked to track your MPN score?🤗

Hi hope you don’t mind me reaching out.
I have PV and after a shower I get extreme itching also if I am tired and warm at night.
Anyone else experiencing this and how do you deal with it it’s a nightmare. Currently on interferon alpha 2a been on it about three months bloods all now normal after three venesections in same timeframe. But still symptomatic itching fatigue irritable and sometimes find things overwhelming. Jak2 positive had the illness for over 20 years no clots and hopefully will manage a normal lifespan lol. But itching has got worse over last few years. Hope to hear from you it’s a great community with loads a support thank you for all your contributions cheers Al.