Spleen pain??

[lizzziep]

I have ET, diagnosed about 5 years ago, I have been on HU, also aspirin, for around 3 years. I have had ongoing pain under my left ribs for around 12 months. I had an ultrasound scan and the doctor said everything, including my spleen, was normal. However some days I have this pain most of the day others it is on and off. My GP says it must be muscular, but surely not for this length of time? Also that it could be pain from my gall stones/bladder mirrored on the other side???? Sometimes it seems to spread a few inches below my ribs, other times just under the ribs, sometimes it feels like "stitch" other times just an ache. Is it just me or does anyone else get it?

[jane13]

Yes, same here. Mine usually goes away if I walk around a bit. Sounds as though you have been well checked-out to make sure it's nothing nasty?

[lizzziep in reply to jane13]

Yes, if I move about a bit it does ease it, I do stretches and side bends - not easily done if you're in the supermarket!

[jane13 in reply to lizzziep]

I have MF and about to start on Ruxolutinib, so was looking at their web site, which says symptoms may include pain under L ribs from spleen enlargement (never seen this quoted before) - but think this doesn't apply to you?

[Islander47 in reply to jane13]

Long term MF patient.  Spleen pain is very common with this illness and also will sometimes show up in the left shoulder. My MPN specialist always tracks the pain level along with asking about shoulder pain.  Was to start jakafi in December, but counts jumped back up. Still watch & wait after 26 yrs!

[lizzziep in reply to Islander47]

Thank you! 😄

[gset]

I have been on hydroxycarbamide for 9 years and aspirin for 12 and had same in January. It then became a massive pain so I was taken to A&e, where they diagnosed it as osesphageal spasm, which accounts for the pain on left side under ribs.  Then they discovered I had a hiatus hernia and prescribed me omezprazole.  I have had two more attacks but a lot less severe and appears to be alleviating.

[lizzziep in reply to gset]

Thank you for replying, I already take Lansparazole to combat the acid caused by the HU. Like Jane13 moving about seems to ease it. Glad it's not just me!

[shankei]

I have ET, on HU and asprin and same happened to me, about two years ago, I kept having this pain in my left side but it was never discovered what it was.  Then I had a scan about a year later and my spleen had gone??? Not saying this is the same for you, but despite the fact that my spleen has disappeared i still occasionally get the pain?  baffles me!!

[lizzziep in reply to shankei]

I think we really don't know what these diseases really do to our bodies!!

[Islander47]

I'm a long term MF patient that also have occasional pain under the left rib. However, I do have an enlarged spleen (20cm) that causes most of the pain.  A MPN specialist will always note spleen pain & also in left shoulder where it tends to radiate too . All that said, pain could be from intestinal issues (gastritis/ gallbladder or mild diverticulitis) Over the years have had my gallbladder removed & colon resection after ongoing diverticulitis under left rib.  Except for gallbladder, all caused by enlarged spleen which was pushing down on the other organs.  Given the fact of no spleen enlargement, I would try watching my diet for several weeks, avoiding fatty foods. and taking a anti acid pill daily.  This might help narrow down what is causing the pain.   

[lizzziep in reply to Islander47]

Thank you!

[EileenMcL]

I am recently diagnosed and have yet to experience any symptoms like this one. But, as my primary care physician referred me to a hemotologist, she emphasized that I should continue to contact her on non-ET conditions. That is because primary care looks more broadly for causes of symptoms like pain, beyond effects of the MPN or its treatment.  I have seen a parallel to this recommendation in my sister's treatment for Parkinson's disease.  Her neurologist has eliminated her disease condition as a cause for various symptoms and then did not recommend treatment nor refer her back to her primary care physician. My sister finally made an appointment with the primary care physician and got treatment she needed.  

If the hemotologist has not found a connection of your pain to your MPN condition or treatment, I suggest that you see your primary care physician. 

[lizzziep in reply to EileenMcL]

Thank you 

[socrates_8]

As I have just commented on your previous Spleen post. It is such a relief to learn that we are all suffering from very similar complaints, and that at least one of us here has suggested that this pain dissipated after ceasing the HU. That is definitely what I will be pushing for too...

Cheers again

Steve (Sydney)

ET/MF?