I am a 74-year-old widow. In 4/21/21, I was diagnosed with ET. My platelets at the time were 1000+. After education at my Cancer Center, I learned the mutation of my JAK2 V617F acts like a broken light switch that stays "on" signaling the bone marrow to continuously pump out blood cells even when they aren't needed. I began taking Hydra—a 500 mg capsule a day. Numbers didn’t go down as much as the Dr wanted. I increased Hydra to two 500mg capsules daily. Numbers went down then up again. So, it went, each time Hydra was changed. That was the case until 3/28/26, when numbers were slowly going back up. I knew what the DR was going to say. At that point, I told him that I didn’t want to take more then two 500mg Hydra daily as side effects were too much. He knew that in August of last year, I had a hip replacement and some of the leg pains I had contributed to Hydra went away. I explained that the side effects got worse the more Hydra I took and it affected my quality of life. I know that I could have it worse. I’m sure a lot of you have had some of the same side effects…thinning of my hair and nails, gas, headaches, fatigue, brain fog, ankle/shin pains, neuropathy hands and feet; and if not hydrated properly dehydration pains, mouth sores, and other side effects that would come and go. That was another surprise as to how some side effects would come and go with out rhyme or reason. I also learned that stress does play a roll with ET. In March, 2026, the Hematologist (who I like) said he could put me on a different ET drug, called Anagrelide .5 capsule. As we know, there are very few drugs without any side effects. I had education on this Anagrelide, then an EKG, then a complete blood work up and then was told I’ll need blood work done 1-2 times a week. I will be seeing Dr at the end of this month to discuss results. My platelets dropped by 100 within 5 days and have gone down a few more after the 2nd draw. I felt better on this RX. Wondering if that could be the placebo effect? We will have to wait and see. I learned from pharmacist that Hydra would be out of my system in 3-4 days—but symptoms would leave little by little. With my new hip, I learned that I had to teach my muscles new memories. It may well be the same after withdrawal from Hydra—who knows? We will play the wait and see game just as I did with Hydra. I know that having a well-oiled Cancer Center and a support system that includes more than family are part of the reason my mental attitude is good. Just like with hydration, water is needed. The same with stress. As an ET patient, I know I need to reduce stress by using humor, mental/spiritual/physical insight, and lots of love for myself. Not looking back is a great mantra to have—as there is no possibility of a would have, should have, or could have. We have tomorrow
@msmac3 wow. What an upbeat person you are. I also have PV. I was recently diagnosed at age 79 and after my platelets went up around 50 points (close to 600) my hematologist has me now on 1000mg of hydrea daily instead of 500 when first diagnosed. I care stress normally and due to your above comments on stress I’m going to work doubly hard at being more “Zen” like. Great attitude you have on the way you have been approaching this blood disorder!
I’ve been taking anagrelide .5 mg daily for 4 1/2 years and doing well with it. At first I had heart palpitations, but that subsided, so I would say the only side effect I’ve had is occasional hot flashes. My oncologist wants me to change to hydroxurea at some point - I need to find out if that’s because of long term effects. Right now I’m very happy staying on anagrelide. I have no fatigue, no hair loss, no brittle nails that I hear of the side effects with hydroxurea.
I’ve been taking anagrelide .5 mg daily for 4 1/2 years and doing well with it for bringing platelets down. At first I had heart palpitations, but that subsided. Occasionally I have hot flashes. I’m not sure what the long term side effects are compared to Hydroxurea, but right now I’m happy to be taking anagrelide. No hair loss, no fatigue, no brittle nails.
I'm the opposite of you 5 years on Hydro now on Anagrelide. I am feeling better and as I said in my comments is it a placebo reaction? I spent all day out in my garden and don't have neuropathy in my feet/toes, that was an issue. Your only side effect is occasional hot flashes. I get those too. I wonder why he wants you to change. If I may ask how old are you. I'm hoping I get some hair back, nails better etc...I did have an EKG and that turned out ok. I take RX for my heart as it sometimes takes off. No really issues. I'm pretty upbeat and have been all my life so I think that helps. Thanks for taking the time to get ahold of me, I appreciate that. Where do you live? I'm on the West side of Michigan along the Lake Michigan coast line.
@msmac3 wow. What an upbeat person you are. I also have PV. I was recently diagnosed at age 79 and after my platelets went up around 50 points (close to 600) my hematologist has me now on 1000mg of hydrea daily instead of 500 when first diagnosed. I care stress normally and due to your above comments on stress I’m going to work doubly hard at being more “Zen” like. Great attitude you have on the way you have been approaching this blood disorder!
@djlom15
Thanks for those words. I think you are wise to look at someway of release any stress you can't do a thing about. That has been what helped me. If I can't do anything about it...DROP IT.
This new RX seems to be better..I worked in my garden all day and no neuropathy in my feet and toes. That was a gift. We can't do anything about the blood disorder but we can do lots to still enjoy a wonderful full life. Age is just a number.
I said I was a 74 year old..that's when I was diagnosed. I'll be 79 in May. I ask where you lived as I wonder if weather has anything to do with ET. When it gets really hot I have no energy. Our weather in Michigan if different all the time...as we like to say "wait around 5 minutes and it will change". Doesn't one notice that weather affects them more since ET came into your life.
I said I was a 74 year old..that's when I was diagnosed. I'll be 79 in May. I ask where you lived as I wonder if weather has anything to do with ET. When it gets really hot I have no energy. Our weather in Michigan if different all the time...as we like to say "wait around 5 minutes and it will change". Doesn't one notice that weather affects them more since ET came into your life.
This makes us really vulnerable to either cold or hot conditions. The first thing I do each morning is check the weather report so I'll know how to dress.
I said I was a 74 year old..that's when I was diagnosed. I'll be 79 in May. I ask where you lived as I wonder if weather has anything to do with ET. When it gets really hot I have no energy. Our weather in Michigan if different all the time...as we like to say "wait around 5 minutes and it will change". Doesn't one notice that weather affects them more since ET came into your life.
@msmac3 Also in Michigan, now lower part of the state instead of UP. Yes, weather changes bother me more now, but I think that's just age. Have had ET (CALR+) x 17 years, and it's only recently I noticed weather changes in the old carcass, though I have the chronic sinus problems everybody else in Michigan has. That, combined with the increased histamines that come with ET, makes Claratin my BFF.
Yes to gardening! I am down to a few porch pots and a dinky herb plot, and it's too early to put anything out. It's enough to attract humming birds, bees, and butterflies. I sometimes take a swing by the local greenhouse to see something green and to smell the dirt.
There's a bird sanctuary we go to that's kind of isolated and not crowded in summer, and that is also my happy place.
@claire1776
On my 78th birthday last year, I got Covid for the first time, and it was bad. But I did not take Paxlovid, I just toughed it out, and I'm still here to for my 79th birthday next month. I was always getting flu shots, and all the other vaccines...........but this year I did not get any. Not making a recommendation just reporting my experience.
This makes us really vulnerable to either cold or hot conditions. The first thing I do each morning is check the weather report so I'll know how to dress.
@janemc Thats' s interesting.....never heard that as yet. But if you're being treated, your platelets shouldn't be high but closer to normal so........?
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@msmac3 wow. What an upbeat person you are. I also have PV. I was recently diagnosed at age 79 and after my platelets went up around 50 points (close to 600) my hematologist has me now on 1000mg of hydrea daily instead of 500 when first diagnosed. I care stress normally and due to your above comments on stress I’m going to work doubly hard at being more “Zen” like. Great attitude you have on the way you have been approaching this blood disorder!
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4 ReactionsI’ve been taking anagrelide .5 mg daily for 4 1/2 years and doing well with it. At first I had heart palpitations, but that subsided, so I would say the only side effect I’ve had is occasional hot flashes. My oncologist wants me to change to hydroxurea at some point - I need to find out if that’s because of long term effects. Right now I’m very happy staying on anagrelide. I have no fatigue, no hair loss, no brittle nails that I hear of the side effects with hydroxurea.
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2 ReactionsI’ve been taking anagrelide .5 mg daily for 4 1/2 years and doing well with it for bringing platelets down. At first I had heart palpitations, but that subsided. Occasionally I have hot flashes. I’m not sure what the long term side effects are compared to Hydroxurea, but right now I’m happy to be taking anagrelide. No hair loss, no fatigue, no brittle nails.
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2 ReactionsI'm the opposite of you 5 years on Hydro now on Anagrelide. I am feeling better and as I said in my comments is it a placebo reaction? I spent all day out in my garden and don't have neuropathy in my feet/toes, that was an issue. Your only side effect is occasional hot flashes. I get those too. I wonder why he wants you to change. If I may ask how old are you. I'm hoping I get some hair back, nails better etc...I did have an EKG and that turned out ok. I take RX for my heart as it sometimes takes off. No really issues. I'm pretty upbeat and have been all my life so I think that helps. Thanks for taking the time to get ahold of me, I appreciate that. Where do you live? I'm on the West side of Michigan along the Lake Michigan coast line.
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1 Reaction@djlom15
Thanks for those words. I think you are wise to look at someway of release any stress you can't do a thing about. That has been what helped me. If I can't do anything about it...DROP IT.
This new RX seems to be better..I worked in my garden all day and no neuropathy in my feet and toes. That was a gift. We can't do anything about the blood disorder but we can do lots to still enjoy a wonderful full life. Age is just a number.
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2 ReactionsI said I was a 74 year old..that's when I was diagnosed. I'll be 79 in May. I ask where you lived as I wonder if weather has anything to do with ET. When it gets really hot I have no energy. Our weather in Michigan if different all the time...as we like to say "wait around 5 minutes and it will change". Doesn't one notice that weather affects them more since ET came into your life.
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3 Reactions@msmac3
Our platelet-heavy blood doesn't circulate normally.
This makes us really vulnerable to either cold or hot conditions. The first thing I do each morning is check the weather report so I'll know how to dress.
@msmac3 Also in Michigan, now lower part of the state instead of UP. Yes, weather changes bother me more now, but I think that's just age. Have had ET (CALR+) x 17 years, and it's only recently I noticed weather changes in the old carcass, though I have the chronic sinus problems everybody else in Michigan has. That, combined with the increased histamines that come with ET, makes Claratin my BFF.
Yes to gardening! I am down to a few porch pots and a dinky herb plot, and it's too early to put anything out. It's enough to attract humming birds, bees, and butterflies. I sometimes take a swing by the local greenhouse to see something green and to smell the dirt.
There's a bird sanctuary we go to that's kind of isolated and not crowded in summer, and that is also my happy place.
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3 Reactions@jodyjazz Thank you so much Jody! There's hope!
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1 Reaction@janemc Thats' s interesting.....never heard that as yet. But if you're being treated, your platelets shouldn't be high but closer to normal so........?