Epoietin injections

[MaggieSylvie]

I'm wondering how quickly it might be possible to feel the effects of epoietin. My kidneys are making it but my haem thought it was worth giving it a go for three months. Does anyone else inject? I just started this week.

[DJK12]

I use it as I continued to be transfusion dependent after many months on ruxolitinib. My experience was that it took three months to show a result. An initial dose of 15,000iu every three days was ineffective after 6/8 weeks. The dose was doubled and finally took my count up to 12/120 (depending how your hospital measures it).

I'm now on 30,000iu every 5 days and this maintains me at 10/100. I think there have been other posts where people have had quicker results and can then inject less frequently. I guess we all react differently. Diana

[MaggieSylvie in reply to DJK12]

Thank you DJK12 for a helpful answer. I haven't had any transfusions; I thought that was a little drastic when it was offered, and I'm not on any drugs apart from aspirin. I'm only supposed to try it for three months, so not sure that's long enough from what you say about it taking that long to show a result but I'll just go with the flow - lots of other things going on in my life. I will have a blood test and an appointment half way through.

[Otterfield]

Yes I am on EPO. I started on 10000 units which didn't seem to do anything. Then it was upped to 20000 and worked almost immediately - I haven't had a transfusion for three months after having them monthly.

[MaggieSylvie]

Were you manufacturing any epoietin at all?

[DJK12 in reply to MaggieSylvie]

I'm afraid I don't know. I have them to stop the transfusions as my ferritin levels are too high. So far no more transfusions but ferritin levels unfortunately have hardly come down. Presumably your consultant has prescribed them for another reason. Best wishes Diana

[MaggieSylvie in reply to DJK12]

Yes I have refractory anaemia with ring siderobes, which means there is less oxygen getting around my body.

[DJK12 in reply to MaggieSylvie]

I have no medical training but that makes sense because a previous consultant, with good, but possibly black, humour described EPO (when debating whether I should have them) as the dodgy drugs used by racing cyclists to boost the oxygen going round their body. Unfortunately they may have fixed my blood count to a degree but sadly not my fatigue and breathlessness however much I try to boost my fitness, but that is probably as a result of the stage at which my MF is at. I am very grateful though to stop the transfusions.

[MaggieSylvie in reply to DJK12]

Yes - I share that black humour. Does it mean I'll be able to run a marathon (if I wanted to)? I'm afraid my RBCs might increase without any noticeable difference to my life. I don't have anything as advanced as you, just MDS/MPN triple negative, and take aspirin. But I've suffered compression fractures which doesn't help.

[DJK12 in reply to MaggieSylvie]

Hope it goes well for you and effects knock in sooner rather than later. I was ready to give up but glad I didn't.

[WeeHarry]

HiI have been injecting eprex once a week 60000iu for 6 years now. It was helpful in keeping my hemoglobin up . I have MF. Also inject zarzio 3 times a week for the white blood and that is stabilising the count. Do take Ruxolitinib 5mg twice daily. I do now have regulare blood transfusions about every 3/4 week intervals.

All the best with your treatment,

[MaggieSylvie in reply to WeeHarry]

Hope it helped you feel better, WeeHarry. My other bloods are ok but platelets are too high. Thanks for your best wishes. Maggie

[Wyebird]

Be never heard of it. Why do you take it?

[MaggieSylvie]

When your red blood cells are not maturing as they should, you get less oxygen in the blood. The kidneys produce a hormone called epoietin which normally tells the bone marrow to produce RBCs and sometimes they don't produce enough. Mine are producing the hormone but my haematologist said we could give it a try to see if would help the fatigue and breathlessness. So presumably, it would increase the number of RBCs so that I'd have more healthy ones, and therefore, more oxygen available. So I have low RBCs and high platelets.

[Cja1956]

I had them every week or so for 4 months when my hemoglobin went below 10.2. After 4 months, my numbers stabilized and I haven’t had them since. I was getting 40,000 iu.

[MaggieSylvie in reply to Cja1956]

Did you feel better?

[Cja1956 in reply to MaggieSylvie]

Yes, my fatigue and brain fog improved, and instead of having my blood taken every week, I started going every other month for the last year and 9 months. But I also take other medication such as hydroxyurea, Fedratinib, and baby aspirin.

[MaggieSylvie in reply to Cja1956]

That's really good. I hope it has the same effect on me; I do blood tests every 3-4 months but I don't have the cocktail of drugs that you are having, just aspirin. Thanks for giving me some hope.