Would appreciate a little advice. I was diagnosed with ET (JAK2 +) in 2001 and have lived with it since then. I am only taking baby aspirin and warfarin due to other immunosuppression medications.
My platelets, since 2006, have been sub-normal but my three BMB demonstrated ET, though my counts are not elevated.
In the last few months, I have been experiencing severe fatigue (and I have been fatigued already!!) and now I have a strange pain in my rib cage which doesn't feel like a muscle pain. In recent days, a blood count showed that my platelets are on the rise!! They're a little above normal now, but have always been hovering around 250,000...
I have been experiencing extreme stress for over a year and thought my fatigue was related to this but now I'm worried that my ET is ramping up!! I'm 50.
Any ideas? I know I should wait for another round of blood tests, but I'm nervous as it will be mid-March...
K
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Karol_Rua
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Hi I understand how hard it is waiting for results. It is not nice to be waiting around with your mind in overdrive. I have E.T and I have chronic fatigue from this. I have bone pain and other strange pains that just choose to show up. They are suprise pains. A suprise where they have come from and a suprise what they are they ease after a while , or I just tolerate them as best as I can. I can say whenever I feel like something isn't right I do think what are my platelets are which in itself can be a worry. I do think whenever we have a little infection going on we get these pains. Just remember you will have things that last a while with you. You are going to feel tired and weak . But you are being amazing with a strange diagnosis xx
Any pain in chest area should be looked at promptly by your GP. In my case it turned out to be pneumonia that was causing pleural effusion and when I eventually had to get urgent attention one lung had partially collapsed.
I’d not had a cough, cold or any obvious chest infection and it took a ct scan to diagnose the problem. Soon sorted with intravenous and then oral antibiotics but it was a big lesson to me around getting attention for any chest pain before it becomes a potentially greater problem.
Sorry to hear that you are experiencing a possible escalation of the ET.
It sounds like you have a complex case with co-occurring conditions that require you take immune suppressing drugs. I am wondering if these medications have cytopenias (suppression of blood cell production) as a side effect. If so, these meds may have been masking the ET or to put it differently actively treating it as an unintended effect.
In the context of ET, pain in the rib cage is not something to ignore. There are several possible explanations, some of which are not related to ET. It is important to note that splenomegaly (an enlarged spleen) can present as pain in the rib cage, particularly in the left upper quadrant of the abdomen or under the left rib cage. This is a MPN symptom that would need to be addressed if present.
Fatigue is the most common MPN constitutional symptom. It is thought to be related to the overproduction of inflammatory cytokines, which causes other MPN symptoms as well. Stress can also be an inflammatory trigger. Your co-occuring conditions may also exacerbate inflammation. Inflammation is not our friend.
If you are not already consulting with a MPN Specialist, suggest this would be a good time to do so. There is only one MPN expert doctor listed mpnforum.com/tsr-the-list/ but I believe there are some others who are not on the list. Perhaps others from Ireland can provide further references.
Please let us know how you get on. Until then, wishing you all the best.
Hi. Hunter has done a great job as usual covering things. I just want to add that getting your ferritin level checked might be helpful. If it’s low it could cause fatigue. Your iron level could be fine but the ferritin might be low. I’ve had this a few times & have had IV infusions to bring it up. I’m sorry you’re having these problems. Katie
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they ease after a while , or I just tolerate them as best as I can. I can say whenever I feel like something isn't right I do think what are my platelets are which in itself can be a worry. I do think whenever we have a little infection going on we get these pains. Just remember you will have things that last a while with you. You are going to feel tired and weak . But you are being amazing with a strange diagnosis xx
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