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Date of last update: 10/12/2017.

Forum Name: Hematology Topics

Question: polycythemia vera, spleen & side pain

 gintar - Sun Apr 12, 2009 5:48 pm

I was diagnosed with Polycythemia Vera in 2004 after routine blood work revealed that all cell lines were elevated, after bone marrow biopsy, and EPO showed low result of 2.5. I have also had JAK2 test, which came back negative, but my hem says that JAK2 is not always an indicator of polycythemia vera. I have been taking Hydroxyurea for about 4.5 years.

My problem is not the polycythemia. I am living with that. My problem is that since 2004, and dx of hepatosplenomegaly, I have had excruciating left side pain. All CT scans have come back negative for any clots or infarctions. Since taking HU, my spleen & liver size has been reduced, but the pain continues. I've had CT's, ultrasounds, etc, but all tests come back with no abnormal results.

My pain levels vary, in that I can go along for a couple of months with a side ache, and then all of a sudden, the pain changes, and becomes unbearable for a couple of weeks. It never completely goes away. I have blood work done every 3 months, sometimes more often if the pain is bad, but the results at this time are within normal ranges, thanks to the HU.

The pain is under my left rib cage, sometimes extends to midline in my abdomen, and also causes the 9th, 10th & 11th ribs on that side to hurt.

I also have osteoporosis (-3.3 at last dexa), and I am wondering if this may have some effect on my pain & what is happening with the side pain. No one seems to have any answers. On my last visit to the doctor a week ago, it was suggested that I have an exploratory procedure to actually take a look at what is happening in there since the pain I am experiencing is debilitating at times and effects my life in such a negative way. I have a job that I sit all day at a computer for, and when I get home at night the pain is much worse after stretching out and I cannot lay on that side. I would describe the pain as dull aching when it's at its 'best' and stabbing, pinching, burning at it's 'worst'. Sometimes the pain area is the size of a football or bigger, radiating from the back side of my ribs to midline abdomin.

I've also had all my regular tests done, colonoscopy, yearly exams, etc. All normal. Is it possible for a spleen to 'go bad', and if it did, would it show up on any tests?

Any ideas that you might have on what could be causing this pain would be helpful, and I would present them to my physician (oncologist/hematologist). I think the worst part of all this is having no answers. At this time, both sides ache, but the left side is the worst.

Also, I was DX with polycythemia and had spleen/side pain prior to weight loss surgery, which was done mainly to help give my organs/spleen/liver more room within the abdomen. For a while in the beginning, I did experience some relief, but it has not remained that way, and my weight has remained normal for the last 4 years.

Thank you for any help/ideas/wisdom you may have to pass my way.
 gintar - Sat Apr 25, 2009 3:33 pm

Just a follow up from my previous post. Since that post, I have had a CT w/contrast, and MRI without, and both tests come out 'normal'. I'm truly am about to go crazy with this pain problem. The doctor prescribed Norco, Morphine & Valium for pain. This morning I woke up with a fever of 103.1, and even after tylenol to reduce the fever, it was still 101.8, and my left side pain is about a 7.

Any ideas of how to proceed? Any questions I should be asking? Are there any tests left to do that could give us a clue? I've been thinking about talking with the Dr about another bone marrow biopsy to see if things have changed in 5 years.

Thank you for your time.

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