Abdominal symptoms?

[Mustang50]

Hi Everyone, as have only recently been diagnosed with JAK2+ ET & PV, does anyone get abdominal, back & spleen pain also abdominal bloating? I have mentioned this to consultant and specialist nurse but they don’t seem to take any notice nor give me a reason for it! 🤷‍♀️

[Hidden]

My very first symptom prior to diagnosis, was lower back pain (similar to kidney pain) which radiated to the ascending colon. This was followed by bloating and reflux, then a domino of symptoms leading to my ET/JAK2+ diagnosis. To this day, 2 GPs and one hematologist say such symptoms were not related to my MPN.

Spleen pain/enlargment though, are known to be related to MPNs. Pressure from an enlarged spleen on nearby organs, can be felt as "abdominal" pain which can also be felt at the back (if nerves are involved).

[Mustang50 in reply to Hidden]

Thank you that’s exactly the sort of pain it’s worse early hours of the morning wakes me up, but once I get up and get going it goes, the only other time it plays up is if I’ve ate something that doesn’t agree,

[Turfbeg]

Hi, my PV Jak2 + was made after blood tests requested by my GP as I had been experiencing pain around my upper midriff. ( front left and back but interestingly not front right). I had an ultrasound to check my spleen which seems to be of normal size. This was almost 5 years ago. The cause of the pain wasn't discovered but it disappeared by the time I saw the haematologist! I am taking hydroxycarbamide and 75mg aspirin.

[Mustang50 in reply to Turfbeg]

These were also some of the symptoms I had prior to diagnosis but this doesn’t seem to concern them.

[Wyebird]

Edson says it all. Has your spleen been scanned? Mine was prior to ET diagnosis. It can increase and store the platelets hence the discomfort. Maybe with medication and reduction in your cell count the pain would disappear. Are you under an MPN specialist?

[ciye]

I have suffered similar pain for years and despite numerous scans & blood tests no cause has been found. It's agony and I believe it is related to the ET, along with chronic fatigue and breathlessness. My haematoligist disagrees 😔

[Mustang50 in reply to ciye]

Exactly the same for me!

[Judypinner in reply to Mustang50]

I am the same.

[Mustang50]

Hi thank for replying yes I did have a spleen scan they said it was ok think it measured 9.7cm and said it was normal, I also get a lot of leg pain and no I’m with an Haematologist not an MPN specialist.

[Heather270240]

I have had breathlessness, bloating, severe back pain for several months and GP can't get to the bottom of it. Haemo dismisses it and says it's not connected to ET. Last Friday my breathing was so bad my GP sent me off to A&E. Chest xray and bloods normal. PLATLETS 634. Consultant said problems were probably caused by Hydroxycarbamide and told me to stop it which I have with some trepidation. I am 80 years old ET JAK2 since 2017.

[Mustang50]

Awwww so sorry to hear this it’s crazy just can’t seem to get to the bottom of it, mine was going on before I started on treatment so will be interesting if you still get it after you stop this medication?

[Hydrox]

I had the same symptoms before diagnosis 9 years ago, etc jak2+, I still have them, the bloating has gotten worse. Had my covid vac, Astra zeneca and my digestive system went haywire for a week.

[Mustang50 in reply to Hydrox]

Sorry to hear this I really don’t know what we can do about it 🤷‍♀️

[Meeko1982]

My symptoms prior to being diagnosed was upper right abdominal pain and feeling like an over inflated squeaky toy. After an MRI they found I had blood clots in my portal vein of my liver and spleen.

[Mustang50]

That is so similar to me what did they do regards this?

[Cja1956]

I have had all of that at various times over the years. Most of the time, it turned out to be UTIs that had caused my organs to become inflamed. One time I had a blood clot in my spleen. Most times I ended up in the emergency room because the pain was intolerable. Sometimes, all it takes is a simple urinalysis. It’s interesting to note that since I changed to an mpn specialist in 2019, I haven’t had any more incidents. I hope you get to the bottom of this.

[Mustang50]

Bless you thank you and stay well!

[Melanie66]

Hello ... I have had and still have abdominal pain & bloating ... have had a good few tests ...nothing found ... I get my belly swelling for a few days then it goes down for a few days ... really am so sick of it ... also no one takes any notice when I complain ....Hospital Staff ...I think it must be some symptom of ET .... as I have had it for years even before diagnosis ...the sensitivity around my belly button area is painful to the point I cannot have any pressure on my belly ,even loose trousers...or even wear a bra ... then it will just stop ....it will start again a few days later , it is definitely some kind of cycle ... love to know how to stop it ....please keep me posted if you ever discover the origins and treatment of this ... as I will you ... all the very best to you ... Lainie. x

[Mustang50]

Defo will keep you updated and thanks so much and yes it is miserable and reason for it!

[Mustang50]

Meant no reason for it!

[tracey13]

My husband always had a dull ache around his spleen. Since starting ruxolitanib it's reduced his spleen back down and the dull aches have now stopped .

Tracey

[Mustang50]

Good to know thank you!

[Uzza]

Hi Mustang,

Yep, same deal all round. Not only that they refuse to give me my allele burden.

Cheers,

Uri

[Mustang50]

Sorry to hear this!

[StupidCancer]

Curious - did you ever get an answer/relief?

[Mustang50 in reply to StupidCancer]

Still having on going tests at the mo

[StupidCancer in reply to Mustang50]

Hoping u get answers and maybe your answers give me a clue to my issues. Have had a VERY rough two weeks with digestive issues and I'm at the end of my rope!

This stuff sucks!