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?

[Jimmyh29]

Myelofibrosis

[skipperL]

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

[Hidden]

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.

[RobinBrum]

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.

[Cja1956]

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. 😊

[Rachelthepotter]

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.

[Fika500]

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.

[Pte82 in reply to Fika500]

My wife uses 15ml three times a day of Liposomal vitamin C to control bruising and purpura. Check with his doctor before using any supplement.