Hi, have higher risk MF, been on Rux for 3 months. Initially on 15mg x 2 per day and felt GREAT! However, Hb counts have fallen consistently and now on 10mg with low Hb and liver results also rather wobbly (had to pass up the champagne for my 60th birthday!). Consultant talking about erythropoietin - anyone any experience of this or similar problems?
jane
I have just started a course of erythroprotien for me it is to try and stimulate better red blood production because of the anaemia I have - can't really comment on effects as yet as have to have 2nd injection tonight - the hard part for me is doing it myself - bit of a wuss about this. x
sounds like similar reasoning from our haematologists for prescribing erythropoietin - do let me know how u get on. Am with u re the injection: is it with a pen, like insulin?
for me it has come in syringes that need to be kept refrigerated with a small needle - saying that my Haematology nurse thought it would be like a pen. I had no problem though I think it was just fear of the unknown. I have a course of 8 to have 2 a week. xx
You'll soon get used to 'shooting up' Caz LOL , , Sorry, , insensitive me 😶. . . I have to inject a few times a week and is daunting to begin with, ,I had to gird me loins and go for it, it was easier than I was expecting. I just had a type of self imposed mental block about doing it esp as all my previous were done by lovely considerate nurses. . But like I say after the initial few I gained confidence. . I'm sure you will. . Chris x
Thanks Chris just done the second one on my own (unsupervised) and ok x
thanks, keep me posted would you?
Jane
certainly will let you know how I am after the second dose this evening x
Hi Jane13 I have been on Ruxolitinib for six weeks & been brilliant no pain no side affects.
Till last few days been feeling tired spoke to heamtoligy this morning they told me to come & have bloods done. Well 7.5. So transfusion right away & stop the angreide,
Back on 15 August.
Hi Jane, I've been on Rux/Panobinistat for nearly 4 years. Initially I was having transfusions weekly it steadily decreased to every 6 weeks until I've now gone since March!!!! MF is a mystery and we're all so different but at no time was any other drug discussed for me. I always look really well and never know when I need to be transfused just get regular checks at the hosp. Good luck.
Hi Jane. I am on a second course of epo having abandoned the first because of spleen pain. Now I have what my haematologist calls 'deranged' liver results and also very high ferritin level so I am trying epo again to try and decrease the transfusion frequency. I think my haematologist will probably decrease my dose of Rux soon as I also have very low platelets. As for the injections, I was dreading them but as Chris says you soon get used to doing it and the needle is quite small and often almost completely painless. Good luck with yours
Good Luck for you hope you get sorted out - agree not had any pain I think it was just a mental block to start with for me - thinking of myself as a dart board lol x
New to Rux
Started Rux
Low saturation with PV and Jakavi 20
