mf 18 months in

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Hello everyone

I was diagnosed with MF on 6th January 2022. On 9 Jan I awoke with pain on the left side of my stomach and in the left shoulder. I had no idea this was related to my recent diagnosis of MF.

I was admitted to hospital where I had tests which showed I had a hugely enlarged spleen with infarcts which are splits in the spleen. I was commenced on hydroxycarbamide 2 x 500 per day.

I had an MRI, a bone marrow test which wasn't too bad and tests showed I had a problem with the JAK 2 gene. I progressed to ruxolitinib and this has reduced the night sweats and shrunk my spleen. I currently take 20mg am and 15 mg pm.

I needed a blood transfusion in May 2022 because I was anemic. I've been fine ever since I've never really understood if the anemia was due to the MF or the Ruxolitinib.

I have fatigue constantly but apart from this life is ok. I see my haemotologist every 3 months.

Thank you for reading this.

Naugus over 1 year ago

Hello,

I have read that ruxolitinib helps greatly with spleen size, night sweats, etc, but makes the anemia worse. I was diagnosed with MF Jan 2020. with no symptoms I was “watch and wait”. At the end of last year my high blood count numbers fell sharply and continue to do so. I am now considered anemic and doc is prescribing ruxolitinib. At this point my symptoms are mild and I understand that new drugs are being approved that do not exacerbate the anemia. So today I’m waiting.

it is a complicated disease and all is not known about it. I joined a MF group on Face Book, I’m not much of a poster myself but there is much information and everyone ones journey is different.

The only control we have over this disease is how we treat our bodies, food, exercise and sleep. We can fight this.

naugus

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