Myelofibrosis
I have been recommended by my consultant to try ... - MPN Voice
I have been recommended by my consultant to try EPO injections to counter my low red blood cell count. Has anyone had this treatment for MF?
I am on Jakafi for MF, but started Epo injections 6 weeks ago. I usually have a transfusion every four weeks but this time was sent away as my HB count was too good - going back two weeks later on Monday - we shall see if I will need a transfusion.
However some years ago I was put on just Epo alone (no Jakafi) and it had no effect. It seems as if it may be the combination that’s working .....
SkipperL
Yes was put on it last April as transfusion dependent and ferritin levels getting too high. No improvement after 3 months so dose doubled and by end of August blood count greatly improved - not at normal levels but good enough to avoid transfusions. I am still fatigued, achy and a bit breathless after exercise ( presumably the MF?), but not the crippling breathlessness of acute anaemia - generally feel better in myself.
A junior doctor said if it didn't work after 6 weeks probably not going to so I wasn't very hopeful when consultant doubled the dose, but glad he persuaded me to persevere.
I am Post ET MF and also on ruxolitinib.
Yes, it works for me. I had been on Hydroxy, after initially being diagnosed with PV. When I shifted into MF, that pushed my Hg levels dangerously way down. So I came off Hydroxy, had two transfusions, two months apart, and started on low dose Epo, going to a stronger does after two months. That was some 14 months ago. I am still anaemic now, but feeling much much better. Hg Levels up from around 80 at worst to 104 at best.
Yes, I was diagnosed with MF in September, last year. I started going weekly to my new hematologist and if my hemoglobin went below 10.2, I got the injection. She also put me on fedratinib and continued with hydrea. I definitely feel the EPO helps. My last 2 visits, my hemoglobin was 10.9 and she told me I don’t have to go back for a month. 😊
I have MF , and found that ruxolitinib(Jakafi) made me anaemic and was prescribed EPO ( originally self injected once a week, now using darbapoetin that only needs injecting once a month. ). It does. boost my Hgb counts ( 12.3 last time ) but despite the good numbers I don’t feel as well as I did when the Hgb was boosted by transfusion.
So its worth trying.
Sorry for the late reply. My husband has Myelofibrosis, resulting in lowering hgb. He started EPO injections (Sureclick) a year ago. I administer it and he says they aren’t really painful. As long as you follow the instructions , they are fairly easy to administer. I ended up finding videos and leaflets on line to train myself to administer it. I use the stretch method , as he bruises too much ( due to low platelets) if I use the pinch method. They kept him above 100 for some time. The dose was gradually increased from 80 mcg , then 150 and now 150mcg as his hgb has git as low as 87. Last week he had two units of blood transfused due to falling hgb. I hope this infirnatiin is geloful. Good luck with the injections.