Erythropoietin injections

[Fika500]

Does anyone have experience or advice about erythropoietin injections?

My husband has post PV Myelofibrosis and is taking Ruxolitinib. His hgb is drifting down -his haematologist does not think it’s caused by the Ruxolitinib but due to disease progression ( white cells are drifting up and platelets drifting down) He gets very tired and sometimes a little breathless so he’s begun a four week course of Aranesp. He has not had any transfusions yet. It’s so helpful when people can share their experiences on this forum, so we’re hoping to hear from anyone who has had erythropoietin injections- what to expect, pros and cons etc

Many thanks.

[Rachelthepotter]

Hi. I have myelofibrosis and when the rux made me anaemic I took epo injections. First in a formulation tah had to be injected weekly, which was a real oain when travelling, as it has to be kept chilled and then Aranesp, which I inject 4 weekly.And also needs chilling.

Worth a try. Its been keeping my hgb levels up, but I still feel dreadfully tired some days. My concern is that the EPO stimulates the production of more red blood cells, but as they don’t function well the hgb reading is misleading. So I couldn’t have a blood transfusion because the hgb levels looked too high for me to need one. And then despite the epo the hgb dropped to 104, and I felt awful, so I had a unit of blood a couple of weeks ago, which did make me feel a bit better.

Hope this helps, but all you can really do is give it a try and see what it does.

Regards

Rachel

[Fika500 in reply to Rachelthepotter]

Thank you for your reply Rachel. That has given me some thought for a question at the next appointment. So, although the hgb may go up, the red cells may not be working properly so that you still feel unwell? I’m sorry you’ve been feeling awful. I hope the transfusion helps. My husband’s hgb is now 94.

I assume the aspect of blood cells not functioning well is due to the Myelofibrosis? Just trying to understand what’s going on- I think that’s what the nurse told me when I asked about my husband still being in danger of infection despite having a high wcc count & neutrophils higher than normal. I think his wcc going up and platelets going down along with hgb are signs of progression.

[Rachelthepotter in reply to Fika500]

Yes, my understanding has always been that one of the effects of the MF is that the blood cells that get produced are increasingly poor quality. But if the epo staves off the need for transfusions for a while, thats a gain.

[Fika500 in reply to Rachelthepotter]

Thanks Rachel

[DJW1]

Hi Joe500, I have been on epo (eprix) for about 4 months, weekly injections at 40k dosage. It changed my life. I was diagnosed with mf last May, and between July and Oct my Hgb counts fell by 25%. My last test a week ago showed it about 5% off a low normal range, and its gone up almost 50% since I started. It took a while for it to start working for me, but its really been the answer for me. Apparently it only works in about 40% of patients, as the rbc's don't always respond to it. I had been having some degree of bone pain as well, and that is now gone too. I think its worth a try. I have not had any issues with it whatsoever.

[Fika500 in reply to DJW1]

That’s great news DWJ and encouraging fir me. I hope they continue to work well for you.

[DJW1 in reply to Fika500]

Hi Again - the one issue with it is that it often will only be able to encourage the red blood cells to do this for a couple years, and then it stops working. However, some people have it work for years and years.I should have also added - my counts had dropped to 81. I am around 120 most tests right now.

[Fika500 in reply to DJW1]

We’re delighted to hear they’re working for you! That nugget of info is very helpful too. Thank you .

[Vancritch]

Hi not sure how much I'm going to help but officially diagnosed on Monday with mf which had progressed from et. On rux, antiviral meds n the epo injections. They were concerned about my hb as it's been dropping since August last year. Apparently for a female ur count should be 115. Mine is 95. The epo injections take a while to work as it appears that the hb were making now we don't get for a number of weeks. So the thinking was that I started the injections as it takes 3 months for the rux to be fully working. That way hopefully one should help the other. However having been at 75 before 're my hb I am aware of how anemia can effect u. Should I carry on getting lower then I may have transfusions to tide me over. I can't say pros or cons as I've just started. But my consultant also said it was the mf that was lowering the hb levels. I think there are some diet pod casts on the patients forum n I'm sorry if u know this already but broccoli has more iron in it than spinach. Maybe helpful looking at foods ..my fridge looks like a sprouting broccoli plant...think I cleared asda out sorry I can't be of more help. All the best n I hope ur husband starts to feel better soon.

[Fika500 in reply to Vancritch]

Thank you. I hope the Ruxolitinib helps you. My husband felt much better once he took it. Great tip about broccoli 👍

[Vancritch]

Sorry only me again. Some one on here told me to always keep a check on my hb levels esp on rux. So I'm keeping my own log from my fortnightly blood results that way I can keep my eye on it myself. Plus it helps me understand why I get so tired.

[Fika500 in reply to Vancritch]

Yes my hysband’s Consultant said Rux can cause anaemia. In my hysband’s case he thinks it’s due to disease progression,

[Malieco]

I inject my dad every month with epo. It has helped his hgb level get higher. He also gets iron IV, but not every month.

[Fika500 in reply to Malieco]

Thank you. It helps to know thus is an established treatment .

[Spirit123]

No I don’t know anything about the injections. I have ET and on Hydroxycarbamide. Had it nearly five years. I don’t think about it much. Just lead a near to normal life. Keep busy and rest when I feel fatigued, it’s a shock when newly diagnosed but doeskin have to stop anyone carrying on as normal. Drink plenty of water. Take the pills and enjoy yourselves everyone.

[Fika500]

I totally agree. My husband was lucky to live well for 28 years with PV. He coped with the itch and had venesection every six weeks , after initial weekly ones. We enjoy what we can when we can and accept the times we can’t. Nevertheless I we want to know /understand as much as possible about MF and his current treatments so we can manage it appropriately.

[Osteomyelio]

How is he doing now on the Rux.

[Fika500]

He did improve on Ruxolitinib but the Myelofibrosis is still progressing. Hence the EPO injections for anaemia, platelets are low and wcc in Hugh twenties.