Low Hemoglobin, New to MPN

[Ket9255]

Hi everyone,

It's been few months since I'm reading your posts and this really helped me to reduce my stress. So thank you all .

My father has been diagnosed with MDS but it's unclear about which type of disease he got exactly. (He lives in France)

At the moment his Hemoglobin is really low he is taking 2units blood transfusion every 4 weeks or so, he started to take EPO, his White blood cells went up around 20 or so(neutrophils high 15) , and his platelets are around 500 /600 at the moment, sometimes higher. He is positive for Jack2 . He is taking 10mg of Jakavi per day(no spleen enlargement) . Except of itching sometimes and tiredness he has no other symptoms.

I was wondering if you have thought about medecine for raising his hgb ? Or New drug for PMF or MF (in case of it is the case). Tomorrow he has an appointment with his haematologist, he will ask question about his exact pathology. (I will keep you update)

Thanks so much

Ketsia

[jointpain]

Hi, has your father been on anything else before the jakafi? What were his blood counts like before taking jakafi? As jakafi is a JAK2 inhibitor and also to reduce an enlarged spleen, which you say he hasn't got. I imagine it has reduced his platelets and red and white cell counts.

I am sure the hematologist will want to adjust the dose and or add other drugs such as anagrelide and hydroxy, also if not done already a BMB.

When my wife was first released from hospital in France, her cell counts were around 1500 platelets, white cells around 47, red cells 119, by the time her diagnosis of MF came through her platelets were around 1900. The JAK2 inhibitors hydroxy and anagrelide reduce all counts so now her platelets are normal, her white cell count is a touch above normal and her red cell hgb is at the low end of normal, or below, when too low she has had infusions of iron, which help a great deal.

Maybe an infusion of iron may be the answer?

All the best.

[Hidden]

I'm also on 10mg ruxolitinib a day, reduced from 20mg as red blood count getting too low. This continued and I was blood transfusion dependent with a very high ferritin level. EPO injections were started and didn't initially help, but after being doubled to 30,000iu twice a week it slowly brought levels up to an acceptable level and I haven't needed a transfusion for a year - so it was worth persevering, in my case, with EPO.

[Wyebird in reply to Hidden]

Do you mind telling me what your haemoglobin level was before epo injections. I’m fighting low levels 96-104 even with one iron tablet daily. Can’t have more because it raises my ferritin levels

[Hidden in reply to Wyebird]

It was between 75-80 and before ruxolitinib dose was reduced between 70-75 (on occasions even lower), so the breathlessness plus the fatigue so many of us suffer from made life tricky. Unfortunately my ferritin is stubbornly sitting between 1200-1500 so something had to be done to avoid chelation drugs.

[Wyebird in reply to Hidden]

Gosh I’m no where near you. My ferritin has I think hit high 400.

I do hope you get sorted,

[Wyebird]

I too suffer from low haemoglobin levels.

No where near as his though.

I try to take chai seeds every day. Very high in iron. Tesco and also sell them. They are like coarse ground pepper. Sprinkle On food.

At the moment it sounds as if medical intervention is the only way for you though .

Good luck