MF and low HGB

[Skye333]

Hi I am early MF but due to worsening itching enlarged spleen and tiredness my haematologist started me on 30mg a day Rux. For the first couple of weeks I felt absolutely marvellous no symptoms so when I went back for my app after 3 weeks it was all good news. Since then I have gradually gone downhill my hgb has gone from 135 to 104 in the space of 9 weeks. He has reduced the run to 20mg a day in the hope that the hgb will go up again but he didn’t seem to think that it will. I feel absolutely washed out, I get out of breath very easily my legs and feet are swelling and I have awful backache.

Does anyone know if it’s possible my blood will go up again. im starting to worry a bit now that things have started to move

Janet x

Sorry for rambling on

[mikerodol]

Hg does go down when start ruxo- mine went down to 77 - but does usually improve after 8 - 12 weeks. I have been on ruxo 40mg daily for about 20 months and Hg now at 118. Obviously not everyone the same but hope things improve for you too

[Skye333 in reply to mikerodol]

Thank you mikerdol I was hoping it was possible it would do that. x

[Rachelthepotter]

Hi. I have MF and had a similar response to ruxoltinib. My haematologist started me on weekly injections of EPO , plus the occasional blood transfusion, and that seems to be keeping my Hgb at around 105 - 110. Which still leaves me feeling fatigued a lot of the time, but bearable.

The theory was that the Hgb would stabilise/go back up/I’d get used to it on the same rux dose. But I needed the extra help of the EPO

and transfusions to get a tolerable life back.

See how it goes.

All the best

[Skye333 in reply to Rachelthepotter]

Thank you Rachel i totally trust the haematologists in Leeds where I go. He said it sometimes comes back but not always. I’m dreading it getting lower than it already is. The fatigue is awful. It just takes you over anywhere and anytime.

What is EPO please? x

[Rachelthepotter in reply to Skye333]

Meant to add. Keep rambling. No need to apologise.

R

[Rachelthepotter in reply to Skye333]

Epo reply seems lost. Its erythropoietin, which stimulates production of more red blood cells. Provided you have enough iron. Means that you don’t need so many blood transfusions.

R

[Skye333 in reply to Rachelthepotter]

Thank you Rachel. I’m a bit scared now that things are moving, I’ve been quite complacent about it so far. It’s hard when you don’t have people around who can relate to what you’re going through. I’d like to be able to ring someone local and say let’s meet for coffee. I’m just so grateful that I have this site to be able talk to though.

I have lost the app to this site when moving things to a new iPad. Do you know where I can replace it please.

Janet x

[jane13]

I went onto Rux with no problem with my Hg but low platelet counts. Initially my platelets got lower, we reduced my Rux dose and I now have much better (higher) platelets but my Hg is steady at c104. General view was that if it was over 100 the package was an improvement as my enormous spleen reduced well. Like you I felt fine on this initially but got progressively more tired. So yes, my counts did change when the Rux dose was adjusted so hope yrs do too. I am managing my tiredness - pace myself, couple of power naps, sleeping tablets for a better night's sleep - but your breathlessness sounds a bit worrying. As I understand it, the Rux trials show that you get the benefits of Rux, incl improved life expectancy, so long as u take >10mg x 2 per day, and that is where we reduced my dose to, to give my Hg the best chance of rising. I don't know whether your other counts/symptoms give room to reduce your dose further? I stayed on 15mg x2 - a higher dose than my counts warranted - for a few weeks to get my spleen down, then reduced to 10mg. Good luck

[Joall]

Hi Janet

I too am in the early stages of MF after developing from ET. I'm not on Rux but my HGB levels are dropping to 100 atm. I'm having an iron infusion tomorrow (First one) to give me a boost and get my levels up. I can let you know how I feel afterwards and if it's successful.

Best wishes

Jo xx

[Wyebird]

Hi, Skye333,

After major dental surgery my Hb went from 115 to 103. Since diagnosed and treated with hydroxicarbomide for Et Calr it’s never gone above 117. After 4 weeks of normal eating and taking high iron food (chai seeds daily? it’s gone up 1 to 104. I haven’t been to the gym for 12 weeks due to fatigue. Although I’m giving any way yoga session a try tomorrow. I do hope your bloods improve.

[Cazbolac]

Hi. I was diagnosed with MF 4 years ago at age 49. I was placed on other treatment initially but it was only when I went on Ruxolitinib that my spleven and liver reduced in size. My dose a ruxolitinib gets adjusted from time to time as my blood counts change. It can be worrying when levels drop and symptoms worsened but hopefully they do level out again when the drug is adjusted. So far after 4 years I have not yet needed transfusions. I find the fact that there are no other sufferers around to talk to very difficult too but this forum really does help best wishes.

[Skye333]

Thank you Cazbolac I think it’s the lack of energy that’s getting me down I am used to being active at 66 yr old.

When I don’t have the energy to even dead head my flowers. My spleen wasn’t over large but the other symptoms made up for it. My itching is surfacing again after just a few days on the lower dose, as is my low mood.

Janet x