Enlarged spleen

[Rich50]

Hello. I was diagnosed with MPN 8 years ago. I'm jak2 and have symptoms of both PV and ET. I take hydroxycarbamide and asprin. Like many of us i have an enlarged spleen. I'd be interested to here from others that get spleen pain and what treatment you have had. Thanks

[jane13]

ruxolutinib worked wonders!

[Rich50 in reply to jane13]

Thanks jane and all others that replied.

I'm now on ruxolitinib. .. wow what a dramatic improvement to all my problems. Spleen getting smaller, far fewer abdominal pains, reduced night sweats, and far less fatigue. I getting to feel my old self again. Side effects all tolerable.

Hope price comes down so that it's available to more.

All the best. Rich

[Janlol]

Hi, I'm ET JAK+ and although they say my spleen is not enlarged I have had 2 splenic infarcts which has left me with constant spleen pain. Have been prescribed tramadol along with pre gablin for nerve pain and have been referred to a pain clinic who may be looking at using a nerve block. I have another CT scan next week to rule out any further spleen damage. Would be really interested also to know how people cope with this pain.

Best wishes

Lorraine

[Orangeboykitty in reply to Janlol]

Lorraine, please be careful with Tramadol. After a little while it gave me vertigo. When I stopped the Tramadol the vertigo went away and has never returned.

[Otterfield in reply to Orangeboykitty]

Tramadol can be great. I had it for severe knee pain for many months, when Paracetamol just wasn't enough. My knees have mostly healed and I came off Tramadol. However, I still have a pack and I have somehow hurt my ankle. The pain was keeping me awake last night so I took a dose. I was SO spaced out, which was okay as I was in bed, but it was a reminder of how powerful and potentially addictive it is.

[jane13]

ruxolutinib did the trick for me but only available on the NHS for limited conditions