PV JAK2+ diagnosed in Jan 2020 after suffering a TIA.
Doc put me on twice daily baby aspirin, and Pegasys at only 25% dose (25ml/45mcg). After 8 weeks, my platelets are back under 400 and alongside the monthly phlebotomies, my Hct is now below 45%. Not much to notice in side-effects either - just some mild and occasional fatigue and dizziness.
With the self-quarantining, I had picked up my alcohol consumption by a good bit early on. My live enzymes (ALT & AST) at one point shot way up around 80 each. I quit drinking for two weeks and everything came right back down.
Anyhow, its a challenging time for all but this was great news for me, and I hope can be inspiring for others who are headed on the same track.
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JT_Marlin
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Well done. I was on Hydrox (17 pills a week), aspiring and phlebotomy for over three years, just to get near level, 30 months ago they reduced my hydroxy and started me on Pegasys, its taken over two years for Pegasys to work, I am now on aspiring, 5 Hydroxy a week, not had a phlebotomy for nearly 6 months.
Originally my platelets were 1162 and Hct 0.614, latest numbers platelets 198 HCT 0.420.. Stay safe and well done..
I love it when someone has good news about their blood levels- hurrah I do hope it continues. If we weren’t I. Lockdown I’d say go out and celebrate - with mocktails of course😃
Great news! Now comes the balancing act of figuring out the right balance of treatment to control the PV symptoms without becoming too iron-deficient. Doing that dance now myself. I wish you continued success.
Great news for any improvement, and good to know phlebotomy is working well. How is other things, like exercise and diet? They must have significant effects on getting treatment. Any observations related to these two parameters: Exercise and diet?
Other than taking a month off of exercise following the January TIA, I have been back at it - usually about 3-4 days per week 30-60 min of intense exercise though I've decided to no longer use weights in my exercise given the chance for "dirty" blood to pass through the PFO when performing a valsalva (bearing down) maneuvre. But I continue to do push-ups, pull-ups, muscle-ups, sit-ups, pistols, running, jump rope, rope climbs all in various quantities and combinations.
It is not good many people after being diagnosed of MPN or something else, change dramatically their lifestyle, good diet and sport/exercise are all gone. Unfortunately many Drs. only focus on medication, give no specific/clear instructions about allowable exercise. So, patient afraid of potential risks, stop all such useful and necessary activities.
Yeah agreed - I had a neurologist, two cardiologists, a hematologist and my primary care doc on my case. Generally folks were fine with me continuing to workout as I do. In my case because of my TIA possibly caused by the presence of a PFO that seems to be linked to heavy weightlifting they all agreed that to the degree that I can cut that out, all the better. Basically, if I'm feeling fine, I'm exercising....particularly in quarantine, we need to be burning cals!
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Some Good News!!!
Pegasys not working
some good news
Good news... and not so good news 😏
