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I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: Jun 19 5:40am | Replies (63)Comment receiving replies
I have been struggling with ET for 18 years now and have found heavy , really heavy exercise helps a lot. I don’t know if it’s the endorphins or maybe my blood getting heavily circulated but it really helps but you have to be willing to go do a 50 mile bike ride when you feel like cr$p. I recently went from Hydrox to Pegasus and my platelets have gone from 700,000 to 450,000 but I feel worse than ever. Not sure why? I also have some very large bruise marks about the size of an orange where I inject myself in the side of the stomach that will not go away. The most concerning is my vision seems to be getting more blurry. It’s so hard to tell what is just from age as I am 68 and what might be from the drugs and disease.
Replies to "I have been struggling with ET for 18 years now and have found heavy , really..."
I have similar issues with PV. It’s been a few years. I have opted not to take any medication other than baby aspirin. My platelets are stable at 700 and WBC at 18. I have fatigue and weakness all of the time. However, I have found like you, I’d I do early morning, moderate exercise I feel much better. And throughout the day, I will stop my work or resting, or whatever I am doing, and do a short exercise/cardio video and my oxygen level remains at 98% and heart rate 75-80. I am a,ways reinvigorated. I say moderate as I am cautious in moving. Slower pace, 15-20 minutes of movement and The energy level rises for a few hours. I had a similar thought as you, maybe endorphins …..maybe depression or sadness causing the tiredness/ fatigue. Whatever, just keep doing what I can. Volunteering to help and staying in touch with friends and family. I pray a lot and have been better at letting go and letting God take a hold of me…..also, I do research dietary issues that might help as well.
Gods blessings to you.
I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.
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I highly recommend you see both an MPN specialist and an ophthalmologist. Best wishes, Eileen