Double Hydrea Twice A Week, Extreme Fatigue After Heavy Workout At Gym On The Days I Do A Double. PV For Three Yrs Anyone Experience This??? | myMPNteam

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Double Hydrea Twice A Week, Extreme Fatigue After Heavy Workout At Gym On The Days I Do A Double. PV For Three Yrs Anyone Experience This???
A myMPNteam Member asked a question 💭

At 73 I’ve been working out for 40 yrs and have a muscular build. Recently, after starting 9 hydrea 500mg per week, I find myself extremely fatigued if I workout hard then take second hyrea that night. Next day is a wipeout.
Experimented with light session and it seems to reduce the fatigue.
Is there any research on the effects of exercise and PV with hydrea? Anyone else in the same boat?

posted January 14
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A myMPNteam Member

I take hydrea at night, this way the fatigue is concentrated during the hours of sleep.

posted January 15
A myMPNteam Member

I maxed out at 1500 mg per day.

I’m down to 1000 mg per day now.

While I don’t work out as much as you, I can tell you that I do notice that my more active days lead to extreme fatigue. I saw a big improvement dropping back to 2 a day after several months of taking them. I now find most of my fatigue comes at the end of the day.

I can see how an uneven dosage schedule might be tough to adjust to.

posted January 14
A myMPNteam Member

Wow!!! That’s great news from you. Terrific info, we are similar and I have adapted a bit better now with easier workouts. Best wishes Peter

posted January 21
A myMPNteam Member

Hi Peter. After reading your post , I was surprised by the number of similarities we share. I’m 68 , diagnosed witch PV 3 years ago. I have been in the gym and pool for the past 50 years doing hard workouts. Currently I’m talking 500mg of hydrea daily and 1000mg every second day. Last winter my workouts were leaving me very fatigued in the afternoons. At that time my hemoglobin was 110 and my hematocrit was .42. I explained my fatigue to my hematologist and she decided that I should have an iron infusion. What a difference the additional iron made. My hemoglobin went up to 150 and my hematocrit went to .48. Now I am back doing full workouts. I swim three 2 klms each week and in the gym for 3 days for cardio and weights. My hematologist now wants to keep my hematocrit at .46 which now includes a few phlebotomies. Personally I am alright with my treatment regimen because it allows me to continue with my activities. At some time in the future this may change but hopefully not for a while. Hopefully this information is helpful for you.

posted January 21
A myMPNteam Member

Hi Pete- I would be very careful & ask a lot of questions if I were you- I took Hydrea for 4 yrs for PMF & ended up with Intersticial Lung Disease which can be a side effect! I was put on Jakifi & doing better for 6 yrs now with the PMF & treat for ILD!

posted January 16

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