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Hi Patty
My platelets have been as high as 970 and as low as 490. No symptoms high or low.
All I will say I was very stressed our when they were 970.
Best wishes
Lyn
All tests do not sure anything, as gave had cr scan, etc, therefore wondering if this is a separate symptom or from ET. I am only on aspirin as under 60 & this seems to control my symptoms of stinging sensation in fingertips & stabbing sensation..
Thank you Eugene for this information & will look into further, much appreciate 🙂
I have Essential Thrombocythemia. Having read much research, posts, and this site, I have read much about the side effects of HU, and proud reports of decrease in platelets after the treatment has decimated them. What I do not hear, and would like to know about is how HU treatment helps (rather than increases) difficult symptoms such as substantial fatigue, energy loss, etc. Thank yoyul.
I haven't taken HU yet, and my platelets are quite high. Staying active is an absolute to maintain energy levels. I mostly hear about quality of life decreasing on these regimens, and appreciate… read more
Does anyone else experience post-exertional malaise/post-exertion symptom exacerbation
PEM/PESE refers to getting exhausted or developing symptoms such as fatigue, pain, inflammation, brain fog, headache, dizziness, nausea, tremor, and even not being able to stand or get up from bed following even trivial activities such as preparing a meal, talking to a friend, having a walk, going to a doctor's appointment or taking a shower. These symptoms can range from mild to severe and can last for days.… read more
Definitely. The fatigue is crippling some days. I went on vacation recently with a lot of walking and stair climbing and was wiped out for over a week after my return. Generally by the end of my… read more
I lowered my dose to raise my counts and it worked since my the Pegasys/Jakafi seems to be going to remission. I guess there's also bone marrow exhaustion if your symptoms are worsening. Not sure what… read more
As long as I take aspirin, my symptoms are under control.
So keep that in mind my friends.
Thank you
I’ve been taking aspirin for years thus I don’t know life without it
For me, it’s not the cure all but I shutter to think about life without it
The short answer to your question is that VAF does matter. It is linked to progression and symptom burden; however, there is not a 1:1 correlation. The reality is far more complex than that.
The… read more
Issues such as chronic migraines, headaches, fatigue, itchy skin, worsened vision, occasional burning feeling in feet, intermittently getting hot, brain fog, body inflammation, etc.
Would peg interferon help these? Jakifi? What others?
Trying to learn 🤷🏻♀️.
Steve, thanks for your input. Always valuable.
You have below a list of symptoms present in MPNs, ET included. Several other studies found that risk score and symptom severity are not necessarily overlapping, meaning that it is possible for… read more
