Hi everyone
Just trying to fine out if there is any link. I have ET and came off HU last yr and started Interferon in May. Have now had to start injections of B12 which I will have for life due to pernicious anemia. If this something that is linked or is it likely to be just me?
Janet, 54, dx ET in 2010
Hello Janet
I am no expert in this field but I think it tends to be more common in those of us that have a MPD. I have MF - started off with Polycythemia - and I have pernicious anaemia too. Also had the B12 injections and just had my three month 'top-up'. I do also take a trial drug Ruxolitinib which is known to encourage anaemia which is a bit of a blow, however, had two transfusions of red cells which seem to have made a huge difference and I think my reds are growing on their own just now which is great.
Lack of the energy I wish for is probably the worst of the anaemia but otherwise it's not that bad and I am hopeful that things will improve as the treatments progress. I am grateful to the opportunity of taking Rux as overall my condition is so much better. Looking forward to a cure for all of us - it will happen as the boffins are working so hard. Wishing you all the best.
Linds
I was diagnosed with ET in 1995 & have been on hydroxycarbamide ever since. About 10 years ago, I was diagnosed with pernicious anaemia so I have B12 jabs; then 9 years ago, another form of anaemia (low ferritin) so I take ferrous sulphate each day: my understanding is that these forms of anaemia can happen because of the effect of the chemo on the bone marrow (as with all things though, it won't necessarily happen to everyone).
ET and surgery
Progression question
BMB pathologist won't commit to a diagnosis?
Flu jab
Aches and pains....
