Effectiveness of HU on ET w/MPL?

Posted by johnnychips @johnnychips, 2 days ago

I was diagnosed with ET & MPL 2 months ago, platelet count of 850 and the doctor started me on HU 500mg, 3 pills a week (M, W, F). After one month, platelet count was 716, so he increased dosage to 7 pills a week (one each day). Two weeks later, platelet count was 699, so he increased dosage to 11 pills a week (two each day, except M/W/F with only one). Three weeks later, platelet count was 675, so he increased dosage to 14 pills a week (two each day). That brings us to the present. So, after two months altogether from the start of the diagnosis, platelet count went from 850 to 675. I became discouraged as I thought HU would bring the platelet count lower and faster. It is going in the right direction but it is still high.What realistically should my expectations be? What is everyone else's experience in terms of the amount of time it took to get the count to less than 400? Would appreciate some feedback on this. Thanks!

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Profile picture for eloise999 @eloise999

I wear a hat outside. I also use spf 50 sunscreen. I also have sun shirts which are lightweight and let me cover up in hot weather. If you have already had skin cancer, I would probably be even more careful, for example avoiding long sun exposure at the middle of the day.

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@eloise999 Thanks for the advice. No history of skin cancer, and that's what I want to avoid yet not be so overly careful to the point of not enjoying being out in the sun. A delicate balance for sure!

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Profile picture for johnnychips @johnnychips

@eloise999 Thanks for the advice. No history of skin cancer, and that's what I want to avoid yet not be so overly careful to the point of not enjoying being out in the sun. A delicate balance for sure!

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@johnnychips

Take eloise999's advice and you will be good to go.

I wear an SPF 50 hat with a wide, floppy brim anytime I'm outside, even when driving. I cover all my skin with either SPF 50 clothing or dark, woven clothing, both of which give good protection. I use a mineral-based sunscreen on my face, neck and ears.

Outdoor chores are done either in the early morning before the sun rises, or in the evening as it's setting. I no longer swim outside.

I probably am too cautious, but my husband's difficult history with skin cancers spooks me.

You might want to check out sunshades to buy for the beach. There's a new type that's easy to set up, but it stays up even in strong winds. That would enable you to sit on the beach without frying.

You may have to do things a bit differently, but you can still have a great time!

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Profile picture for janemc @janemc

@johnnychips

Take eloise999's advice and you will be good to go.

I wear an SPF 50 hat with a wide, floppy brim anytime I'm outside, even when driving. I cover all my skin with either SPF 50 clothing or dark, woven clothing, both of which give good protection. I use a mineral-based sunscreen on my face, neck and ears.

Outdoor chores are done either in the early morning before the sun rises, or in the evening as it's setting. I no longer swim outside.

I probably am too cautious, but my husband's difficult history with skin cancers spooks me.

You might want to check out sunshades to buy for the beach. There's a new type that's easy to set up, but it stays up even in strong winds. That would enable you to sit on the beach without frying.

You may have to do things a bit differently, but you can still have a great time!

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@janemc Good advice, thanks!

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ET / CALR. Diagnosed with 1.1 million platelet count. HU brought it down to 400k in 16 months.
Now it’s 500k with an unrelated diagnosis - pain increases your count.
I see my heme soon and he’ll probably increase my HU.
Everything affects your count so don’t worry about fluctuations in whatever range your heme says is normal for you. Your dosage will fluctuate and that’s normal.

Having a good heme/onc is everything!!

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Profile picture for janetbender @janetbender

ET / CALR. Diagnosed with 1.1 million platelet count. HU brought it down to 400k in 16 months.
Now it’s 500k with an unrelated diagnosis - pain increases your count.
I see my heme soon and he’ll probably increase my HU.
Everything affects your count so don’t worry about fluctuations in whatever range your heme says is normal for you. Your dosage will fluctuate and that’s normal.

Having a good heme/onc is everything!!

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@janetbender Good to know. Thanks. All the best!

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CALR here. Took 18 months to go from 800s to 400s with a dose increase after 12 months. Some of us are slower to respond. My dad also had ET, and he never got below 600. I've been on HU 8 yrs. Never got below 400, but hemo is happy with stability in 400s and occasional spike to 500s once every year or two.

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Profile picture for nohrt4me (Jean) @nohrt4me

CALR here. Took 18 months to go from 800s to 400s with a dose increase after 12 months. Some of us are slower to respond. My dad also had ET, and he never got below 600. I've been on HU 8 yrs. Never got below 400, but hemo is happy with stability in 400s and occasional spike to 500s once every year or two.

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@nohrt4me Thanks for the info. It appears I need to give the process more time. It seems that after 2 months going from an 850 count to a 675 count may be OK and hopefully will go further down in couple more months of HU at 1000mg/day. I appreciate all the comments by everyone on this forum as the comments are quite helpful in understanding and relating to real life experiences regarding ET and HU.

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Profile picture for johnnychips @johnnychips

@janemc Thanks for sharing your experience fellow ET w/MPL. It seems that I need to be more patient and give the process more time. At least the platelet count is moving in the right direction. Thankfully, at least so far, I have had no noticeable side effects from HU other than some occasional fatigue (which is unclear as to whether it is due to ET or HU) and increased photosensitivity on my skin. The latter has become an annoyance as I enjoy the sun and particularly with the upcoming summer it seems I need to be extra careful with sun exposure. Some people counsel using 50 SPF and 70 SPF sunscreen protection + wearing a hat + covering as much skin as possible. That is going to be quite challenging as we're heading down the shore for a month, and hanging around the pool, beach and bike riding...I can use some advice on the level of caution I need to take without being unnecessarily paranoid about it.

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@johnnychips I was dx with breast cancer a month after being dx with Jak2ET. I had radiation in March so no sun on my left arm and torso for at least 6 mos. I have a convertible Mustang btw and we just bought a boat last summer. I started using Blue Lizard sun screen and I don’t even have to wear clothing over it, it works so good. I was on HU for a little over a month but couldn’t tolerate it. Starting a anagrelide today. Good luck!

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Profile picture for johnnychips @johnnychips

@nohrt4me Thanks for the info. It appears I need to give the process more time. It seems that after 2 months going from an 850 count to a 675 count may be OK and hopefully will go further down in couple more months of HU at 1000mg/day. I appreciate all the comments by everyone on this forum as the comments are quite helpful in understanding and relating to real life experiences regarding ET and HU.

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@johnnychips Yes, some people respond real fast and others not. Would be good if docs could tell you that, but most helps have so few ET patients that their own experience is limited.

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Don’t know if this helps I was diagnosed in Nov 2025. I take 2 HU one day and 3 HU the next day. Alternating doses ! My platelet count 306 and white blood count 5.3. Maybe this helps

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