Spleen...

[LucyAshtonGeering]

What do you take when your spleen’s hurting? Mine’s been tweaking since January, and has now started aching enough to stop me sleeping at night. I’m ET JAK2+, on 2 x baby aspirin daily, platelets approx. 600K 2 months ago. I’m going to try to speak to my hospital healthcare team and was wondering in the meantime if anyone could suggest any management advice. I’m just taking paracetamol atm which wears off quite quickly. Thanks!

[jane13]

tricky, probably only paracetamol, but I get something with codeine in at night which helps me sleep, from my GP.

[LucyAshtonGeering in reply to jane13]

Thanks jane13, I’ve been summoned to see the haemos in a few days so I’ll ask them about codeine then. I’m debating whether or not to take something before I go as I know they’ll palpate my spleen which makes it hurt like hell!

[jane13 in reply to LucyAshtonGeering]

why does yr spleen hurt? If enlarged r u on Ruxo?

[LucyAshtonGeering in reply to jane13]

I’m not sure why, unless it’s progression? I’m only on aspirin and ‘Watch & Wait’ at the moment, but I’m JAK2+ so there’s an increased chance of progression. Plus my Mum’s PV progressed to MF so I always have that in my head when my spleen starts grumbling. Fingers crossed it’ll calm down. I think it’s possible to have a slightly enlarged spleen with ET, no?

[beetle]

Yes, Lucy. It is possible to have slightly enlarged spleen withET. Mine was enlarged right from diagnosis but I still went another 17 years before progression. Hope you get some answers soon

Best wishes, Jan

[LucyAshtonGeering in reply to beetle]

Thanks Jan, that’s reassuring to know. It sounds like you have MF now, how is it treating you?

Best wishes,

Lucy

[LucyAshtonGeering]

Hi Roy, do you have an MPN? I see that you’re selling these products that you’re endorsing. What’s your experience of them for MPNs?

[JaynieQ in reply to LucyAshtonGeering]

I’ve just asked the same question LucyGeering!