Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. I have been asking about Ruxolitinib with my Haematologist but I'...
Does anyone have experience or advice about erythropoietin injections? My husband has post PV Myelofibrosis and is taking Ruxolitinib....
Potential unrelated donor found
Hi All, A bit of an update. My local transplant unit has advised that a potential unrelated donor has been found for me on the German bone ma...
My ‘ crossover ’ MPN has transformed to Myelofibrosis ( confirmed by BMB ) and my new consultant has decided that the only medication is Ruxo...
Rux and Hydroxy
I had my haematologist appointment this morning. Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarba...
PV stinging itch and Ruxolitinib
Hi all I really can’t wait to share how Rux has changed by daily life in less than a week. I was approved for Ruxolitinib and started taking ...
Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to st...
Erythropoietin injections. Immature cells.
Hello. Has anyone had erythropoietin injections?...
I was diagnosed back in May last year with MF Calr type 1 symptomatic without enlarged spleen and was started on Ruxolitinib 20mg BD, 300mg a...
Hi, does anyone know why Ruxolitinib has made me gain weight?...
Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today....
Has anyone with MF and on Ruxolitinib tried CBD oil? I have a good deal of pain in my back and haemo says to go to doctors to get some nerve ...
Molecular Improvement – Exercise, & Dietary Regime or Medication(?)
Morning/Gooday/Good Evening (?) ......
Good report on Ruxolitinib
Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down ( a...
Ruxolitinib for Polycythemia Vera
I was diagnosed with Polycythemia Vera in Dec 2005 ( JAK2+) and had symptoms including visual disturbances for about 2 years before this. I h...
Burst blood vessels?
These little red marks have come up on my right hand. I haven’t banged it....
Jakafi scare - MPN Research Foundation reply
" This provides further motivation for studies that explore why people with ET or PV progress to MF and/or have a worsened prognosis, and how...
I would be really grateful those of you taking Ruxolitinib could tell me the benefits and problems they've experienced as I may be offered it...
Who leads the MPN research at the Royal Surrey in Guildford?
Hi. I might be changing my local hospital to the Royal Surrey County Hospital in Guildford....
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