It started well…

[JaynieQ]

Hello all

A quick update before I ask for your thoughts please…

66 years old, ET MPL diagnosed 2015 - asymptomatic for 9 years, treated with aspirin only

HU started 28/10/24, 500mg x 5 days, seemed to tolerate it for the first few weeks but have since developed bone pain and ongoing fatigue.

I’m wondering if this is temporary whilst my body adjusts..? I felt fine before I started the HU and now I feel awful..

Anyone experienced similar?

Thank you for any input or advice 🙏

[Cat1001954]

hi I have ET two years and counting I get occasional bone pain not nice and bad fatigue sorry to say

[Hbm1]

Hi Jaynie

I too have ET diagnosed in May this year and on aspirin and 500 HU daily. I also had bone pain plus a myriad of other symtons including weight loss, parethesia, fatigue, tingling hands and burning feet, occasional spells of facial numbess.... I had a couple of improved weeks after starting the meds and to be fair the bone pain did eventually disappear but then all my old symptoms not only came back but worsened. It turns out I have a Vit B12 deficiency which has been worsened by the HU and Lansaprazole which I take to counter the aspirin. But here's the thing, my B12 blood test shows normal but is on the very low side of normal which isn't good. I mentioned this to my GP a month ago and he gave me a B12 jab there and then. To say that it has transformed my life is no exaggeration. Almost all my symtoms which now date back to last year and had been put down to the E.T., have disappeared. So my advice is to get your B12 level checked and if it's under 300 take action!! Oh...and let us know.😉

[katiewalsh]

Hi

I know that bone pain & fatigue are problems associated with MPNS. I’m not aware of them being caused by HU. Do you have an MON specialist who’s treating you? I suggest you ask your doctor soon if this could be from the HU. If you don’t have a MPN specialist, I strongly recommend that you get one if possible. I’m sorry to hear that you’re having these problems. Katie