MF and anemia: Recently diagnosed, 56 years old on... - MPN Voice

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MF and anemia

Lallybroch1 profile image
11 Replies

Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?

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Lallybroch1 profile image
Lallybroch1
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11 Replies
hunter5582 profile image
hunter5582

Sorry to hear about the anemia. The recently approved momelotinib is indicated for MF with anemia. Suggest to review this option with a MPN Specialist.

Chicagopv profile image
Chicagopv

yes. Roxi made me nearly anemic. I was taking iron but that bothered my digestion. So now I’m trying to eat high-iron foods. I’m mostly vegetarian, so that’s a challenge. But there are high iron plant foods. We’ll see if that works when I get my next blood test in July.

MWxxxx profile image
MWxxxx

Hi. I have recently started Rux for PV but also used to get anaemic on hydroxy too. I have already had one course of iron tablets since starting Rux 3 months ago. I don't have to take them for long - usually a 7 day course over two weeks taken on alternate days. Haematologists seem to be divided on iron tablets. I have had a couple who have been very much against it but that is because they worry it might take me over the limit and result in a venesection. My past experience has shown that having this small boost of iron - for me - works well and I have found less resistance from Haematologists now it is on my records that it is effective. However, everyone is different and there may be another reason why they are resistant to give you iron tablets.

ainslie profile image
ainslie in reply toMWxxxx

I am curious as to why you are anaemic on Rux for PV, I am Rux for PV for seven years and experts tell me that there is no need to be anaemic on Rux for PV just reduce the dose, is there some reason you can’t reduce the dose.

Lallybroch1 profile image
Lallybroch1 in reply toainslie

If i knew why i was anemic i would be able to remedy it. Consultant has given me iron tablets, i just wondered if this was something people sufferred from

ainslie profile image
ainslie in reply toLallybroch1

What shows you your anaemic is it your haemoglobin , if so why not reduce the dose.

Before I started Rux I asked DrV (who was a expert on PV and Rux) what about becoming anaemic on Rux for PV (different for MF), he said simply to reduce the dose until no longer anaemic, so when I read that someone is anaemic on Rux for PV I am curious.

Lallybroch1 profile image
Lallybroch1 in reply toainslie

My red blood cells are very low, i am exhausted, get out of breath really easily and my brain feels.like cotton wool. I am going by what my consultant says as he is the expert not me, so i will wait and see what he says in a week

MWxxxx profile image
MWxxxx in reply toainslie

My WCC s are high. The move to Rux was to see if they would come down with a different treatment as HU didn't seem to affect my white cells. Last test showed WCC just outside normal range so was looking good, not good enough to reduce the dosage though.

lizzziep profile image
lizzziep

I’m on Rux and anaemic, I have two self administered EPO injections a week to help combat it. Still low counts though.

Bullace profile image
Bullace

I have MF and was anaemic both on Rux and now on Fedratinib. I take Danazol and that has helped a bit but I have transfusions every 6 weeks as my HB counts always begin to slide downwards. I think it's a combination of the disease and the drugs. Hilary

MCW22 profile image
MCW22

I'm post pv mf and because of high white cell count my rux was increased to 15mg twice a day. The whites are now at 29 which is the lowest they've been in years. I'm also taking an iron tablet every other day to combat the low hb. This balancing act seems to be working for now.

Carol

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