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Re fatigue data

Re fatigue data

Many thanks to all of you who responded to my earlier post, which encouraged me to start looking further for info on fatigue in MPN patients. I came upon this paper from our American friend Prof. Ruben Mesa bmccancer.biomedcentral.com...

which is a large scale survey of MPN patients in the USA, which includes an analysis of the symptom load, which I have tried to attach as a photo. Interesting (but not surprising) that 80% of MF, 73% of PV and 71% of ET patients complained of fatigue over the preceding 12 months. So, given that we cannot all be wrong, fatigue really is the number 1 problem that most of us suffer. The only question now is how do we get that message out to the wider world (including medics) in an effective manner?

Little by little, we will get there

John

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Hi JohnIt’s ironic that drugs like ruxolitinib make the fatigue worse: spleen reduction is the primary end point measure so far in trials for possible MF drugs., and lessening fatigue doesn’t score as an improvement. . I’d like to see a straight question on fatigue on the same 10 point scale ,as all the other items. Fatigue often gets left off the list of ‘ constitutional symptoms’ that are an important input into the various severity indices.

I see that reduced muscle ,strength is a result of MPNs, especially MF - I wonder if reductions in muscle ,strength are related to fatigue?

Rachel

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Hi John,

Thanks so much for the interesting discussion regards fatigue, and for the survey information. Fatigue is really my number one day to day battle, and has been increasing as dosage of Hydroxyurea has increased. I can only attempt a very modest portion of what I could accomplish even compared to 12 months ago (a time prior to HU medication, but when I was struggling with the fatigue and other symptoms of the ET itself). I was then a full time potter and I can look back quite objectively to what I used to get done by looking at my kiln log book where I have recorded firings.

I too have on-going annoyances with medical people who seem incapable of listening/comprehending/believing that the symptoms have anything to do with medication or disease. I honestly can't understand what they find so difficult about it! To me it is a simple example of cause and effect! Sadly, for a number of reasons, I find it increasingly difficult to have any confidence in my haematologist, and can only keep taking the pills with thankfulness that they are helping prevent a stroke, but also with sadness for the collateral damage they cause! I wish I had some alternative, but peg interferon, or anything more exotic, is not funded here.

Clearly some of us are more affected by symptoms than others, as demonstrated by the various survey results and by the comments on the forum. I notice that some have stable platelets unmedicated for years and can be largely symptom free, and others, such as myself, had a fairly rapid increase of platelets and a bewildering array of system failures. This is mostly a result of genes, of how we are assembled, rather than anything we can control through positive thinking, religion or exercise! It is certainly not our fault!

Sorry for rant. Rather tired this morning! I really appeeciate your interesting posts and questions on the forum.

Kind Regards ,.

Peter

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Hi Peter, and thanks so much for your reply and for your gripping Biggles adventures, which always make me smile. I think we are more or less in the same (slow) boat. Like many of us I have good days and down days, but overall I recon my energy levels / ability to do things is running at less than, 50% of what it was before I was diagnosed with ET and put on hydroxy in September 2107, and still descending. Unfortunately, my ego / inner expectation of what I can do hasn't caught up with reality and my wife frequently has to tell me to reign back a bit to avoid overdoing things :-(

Quite how we overcome the lack of knowledge / understanding from many in the medical profession I haven't figured out yet, but thankfully we have us - a group of people who are always willing to listen and offer support and advice.

Great to hear from you and keep Biggles in flying trim. Watch out! Bandit haemos at 10 O'clock!!!! ratatatatat

All the best

John

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Hi John,

Bless you, you've cheered me up! :-) Biggles better come out of hibernation and start popping at some more bandits... particularly those in white coats with clipboards and stethoscopes! I have noticed real similarities between your experiences and mine with the ET hydroxy thing, and it is so very difficult finding the right balance of doing something and not overdoing it. One frustration is that there seems to be so "little in the tank" these days, that anything beyond just getting up and going through the motions of the day easily push one into the "overdoing it" side of the ledger. Sometimes I simply shut my eyes to the consequences and keep on like an old bulldozer, simply to have the satisfaction of having achieved something, even though I know I will pay for it. I'm currently in the "paying for it" part of the cycle!

Best Wishes,

Peter

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Thanks for posting this and taking the time to track it down!

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John

Brilliant, thank you.

Anna

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Hi John

Do you take magnesium? I cured my fatigue with magnesium.

Peter

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Thank you😊

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