Has anyone tried EPO to help production of red blood cells?

[Janll]

Interested to know if it has worked for you. I’m on injections every fortnight. I’ve had four so far.

[WeeHarry]

Hi I have been on EPO injection for 4 -5 years and blood transfusion have not been as frequent. I am on Ruxolitinib 5mg twice day and that made a difference improved my energy alertness etc. I did try Ruxolitinib earlier but the dosage did not suit and caused Hg to drop and need for transfusions fortnightly. I have MF

[Janll in reply to WeeHarry]

Thank you for your speedy reply WeeHarry. I was diagnosed with MF just over three years ago. I am not on any other medication other than transfusion every four months. I may not need them that often now. My platelets are very low so other meds are not really suitable. I’m 72!

[WeeHarry in reply to Janll]

Hi

I am on epo 60000 IU/0.75mL once weekly and Filgrastim 300mg/0.8mL three times week for white blood count and count OK. My platelets are low but stable. I'm 79 and diagnosed in 2007.

[Janll in reply to WeeHarry]

Hello, sounds like you are getting what you need and you are coping well. Do you get the flu jab? I’m dithering about getting one. My platelets sometimes get as high as 50 but more often in the 30’s. It’s good to touch base with you. Where do you live? I’m Weston-s-Mare based. Originally from California, here since 1973. 😊

[WeeHarry in reply to Janll]

Hi

I have had a Flu jab and no reaction up to now. Last year I had a dizzy spell. My platelets are in 30's so similar. I live in Harrogate but from Dumfries Scotland moved to England in about 1958.

[Janll in reply to WeeHarry]

I’m very pleased to meet you. I haven’t gone on the forum for a very long time. I was given three years and those three years were difficult but that was May and now I’m looking forward to living for as long as the Lord wants me to. I wish you a very good day. Jan

[Cja1956]

Hello, Jan11, I was diagnosed with post ET MF last September, 2029, when I switched doctors. She put me on Fedratinib and EPO injections weekly if my hemaglobin went below 10.2. I started out at 8.9 with my platelets in the 700’s. Within about 4 months my numbers stabilized and I haven’t had an injection since January. So, yes, I would say they worked. I still take fedratinib, hydrea, and baby aspirin but I only have to see her every other month, now.

[Janll in reply to Cja1956]

Good to hear they have worked for you. I’m due for my first blood test since starting the EPO next week. I fee encouraged after hearing from you and WeeHarry. Thank you for replying, Jan

[DJK12]

I've been on EPO injections for 18 months as was blood transfusion dependent despite ruxolitinib being reduced to 5mg twice daily. It took a bit of time to work and dose had to be doubled after 2 months. Now on 30,000iu injections every 5 days and blood count reasonably stable. Only problem is my ferritin is far too high from constant transfusions so blood had to be taken off last month and it's taking a bit of time for count to come back up.

[Janll]

I hope the doctors have got the right measure for you. It does sound like your body is reacting well. My EPO box says, 300 micrograms. Seems small but if they are working....! I’ll know after next week after my phone consultation. Where are you living?

[DJK12 in reply to Janll]

Yes dosage was discussed both with doctor and hospital pharmacist - I was on it every 3 days but when count finally started normalising it was reduced to every 5. Does clutter up the fridge though! I'm in Scotland.

[Janll]

I only have to puncture my tum once every fortnight. Not really liking to do it though. I HATE needles! I have grandchildren in Scotland, Kilcreggen. They spent a week with me and I was able to keep up. 😲 this is what makes me think the EPO is working.

[DJK12]

Yes that sounds as if it's working! I'd used Pegasys in the past so had got used to injecting thankfully. My last consultant had a very good sense of humour and she referred to EPO as the 'Lance Armstrong drug' as it's what he used to cheat at cycling. I haven't regained enough energy to get back on a bike but I'm certainly less breathless and can garden and walk for longer. I was brought up in Greenock straight across the Clyde from Kilgreggan! Now in the east of Scotland and still miss the views of the Argyll mountains especially in the winter when they have snow on them.

[Janll in reply to DJK12]

This EPO is my first drug to use. Probably to sort out my RBC that has been dipping. Platelets are low but no help in that area, as long as they stay in double figures I was told. Thank you for replying DJK. Jan

[beetle]

I tried Epo for a while but it caused spleen pain. My haematologist is reluctant to put me back on it for that reason. My spleen is bigger now too. It means I am transfusion dependent

[Janll in reply to beetle]

Thank you for replying to my message, beetle. We’re all so different! Where do you live? I’m Weston super Mare. Are you having any other meds that can help you? Jan