I was diagnosed with myelofibrosis in late 2021 and since been transfusion dependent untill being prescribed Jakavi (ruxolitinib) and other drugs to combat side effects (Aciclovir). From my diagnosis I was informed that the only option due to the stage...
just been diagnosed with mf,not sure how I feel ,google states a poor prognosis but other sites are more positive, just confused about prognosis.
Following on from my first ever post & the lovely reply I got... I am here xx Morning all, It's 0350, I got up with hubby as he's off to work in a bit. I'm having a moment. I've sat here before wanting type, ask questions & generally say these ars...
Hi friends, well yesterday I had a trip to the MacMillan unit (yes, it's really called that) at the Ulster hospital on the outskirts of Belfast. I very rarely see the haematologist to whom I'm assigned. Yesterday I saw Doctor McClintock who last spoke...
Hi All. I've just joined this group having been diagnosed with ET & PV in Jan 2022 (aged 49). As a result I have had 20 venesections in the last 7 months. This has resulted in me now suffering with fatigue and having to take time off work. I last spoke...
has anyone had mf for a while and does treatment help with symptoms.
Hi everyone, I have ET and have never mentioned to my specialist nurse about how it affects me day to day. I think I've made a huge mistake as I now find myself on Universal credit and I'm being assessed for ESA. If I contact my nurse and start to tell...
Hi i was recently diagnosed with Myelofibrosis so am at the early stage of anxiety of what the future holds for me
I suffer from Essential Thrombocythemia for which I take Hydroxycarbamide. I generally feel O.K. except that I have a skin itch which detracts from my quality of life. Although it does occur during the day, it is at its worst at night (when I've no other...
Has anyone managed to claim disability benefit, finding work getting harder, dizziness fatigue bone pain, I am 64 year old female and days am shattered any help or advice would be great
