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Essential Thrombocytosis: What amount of hydroxy do you take?

Posted by magnolia1949 @magnolia1949, Nov 27, 2023

I am so thankful I found this group! I was diagnosed with Essential Thrombocytosis about 3 years ago. At first I was taking 500mg of Hydroxyurea once a day. I have gradually had to increase the dosage because my platelets were still increasing. Now I'm taking two capsules a day (1,000 mg daily). My main issue is I have extreme fatigue. Does anyone else out there take this amount of hydroxy and if so what side affects are you having?

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hlyonsrn | @hlyonsrn | Dec 6, 2023
In reply to @csanjuan "I’m also thankful for this group! My very supportive husband found this for me. I was..." + (show)
@csanjuan

I’m also thankful for this group! My very supportive husband found this for me. I was diagnosed with ET and Jak2 mutation in 2019, but decided with my dr to just keep an eye on it and continued with bloodwork every 4-6 months. (During this time I was helping with my brother who has Mantel Cell Lymphoma. And caring for my mother in law, who has Alzheimer’s.). Fast forward to September 2023, my bloodwork numbers were very high, so my dr referred me to a hematologist/oncology. To date, I have had 3 phlebotomys and take Hydreau (2 500mg) each day. I have also had a bone marrow biopsy, where I am positive for Polycycemia Vera (PV). Tried taking the Hydreau in the afternoon, but was so fatigued I had to take a nap every day. Have since moved to taking it in the evening after dinner. This works much better for me. My numbers are back within range, so no phlebotomy for the last two appointments, but still on the same milligrams. I’m still pretty fatigued, only a nap once in an awhile and I try to walk outside at least 20 minutes when I can. This whole thing definitely brings me down, but I rely on my faith to get me through. My next appointment is next week, so we will see where I’m at.

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The fatigue is so real. I was just diagnosed in March 2023. Can't wait to go to bed at night. Can sleep go 12 hours if nothing to get up for

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Lori, Volunteer Mentor | @loribmt | Dec 6, 2023
In reply to @csanjuan "I’m also thankful for this group! My very supportive husband found this for me. I was..." + (show)
@csanjuan

I’m also thankful for this group! My very supportive husband found this for me. I was diagnosed with ET and Jak2 mutation in 2019, but decided with my dr to just keep an eye on it and continued with bloodwork every 4-6 months. (During this time I was helping with my brother who has Mantel Cell Lymphoma. And caring for my mother in law, who has Alzheimer’s.). Fast forward to September 2023, my bloodwork numbers were very high, so my dr referred me to a hematologist/oncology. To date, I have had 3 phlebotomys and take Hydreau (2 500mg) each day. I have also had a bone marrow biopsy, where I am positive for Polycycemia Vera (PV). Tried taking the Hydreau in the afternoon, but was so fatigued I had to take a nap every day. Have since moved to taking it in the evening after dinner. This works much better for me. My numbers are back within range, so no phlebotomy for the last two appointments, but still on the same milligrams. I’m still pretty fatigued, only a nap once in an awhile and I try to walk outside at least 20 minutes when I can. This whole thing definitely brings me down, but I rely on my faith to get me through. My next appointment is next week, so we will see where I’m at.

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Hello @csanjuan. Your husband gets an extra hug for telling you about Connect! ☺️ Welcome to the group. It’s always helpful to find you’re not alone with a diagnosis and have other people to talk to who are going through the same medical issues.
Looks like you have double the ‘fun’ with having both ET and PV. Both are treated similarly with HU so it’s good news to see your numbers are back within normal ranges and your rate of needed a phlebotomy has slowed down!

Having gone through a health issue myself, I know how this can tap into your daily life with a level of uncertainty. We’re never quite the same when we feel like our body let us down. It’s important to not dwell on ‘what ifs’, however. That thought process is an energy sapper and stress producer. Staying mentally positive is a key to survival. From what I’m reading, I think you’re handling this well with making sure you get daily exercise and grabbing a nap when needed. There’s no shame in napping because it’s important to listen to your body. If she wants to nap, then so be it! ☺️

You’re having blood work next week so best wishes for only good news there! Let me know what you find out, ok?

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csanjuan | @csanjuan | Dec 6, 2023
In reply to @loribmt "Hello @csanjuan. Your husband gets an extra hug for telling you about Connect! ☺️ Welcome to..." + (show)
@loribmt

Hello @csanjuan. Your husband gets an extra hug for telling you about Connect! ☺️ Welcome to the group. It’s always helpful to find you’re not alone with a diagnosis and have other people to talk to who are going through the same medical issues.
Looks like you have double the ‘fun’ with having both ET and PV. Both are treated similarly with HU so it’s good news to see your numbers are back within normal ranges and your rate of needed a phlebotomy has slowed down!

Having gone through a health issue myself, I know how this can tap into your daily life with a level of uncertainty. We’re never quite the same when we feel like our body let us down. It’s important to not dwell on ‘what ifs’, however. That thought process is an energy sapper and stress producer. Staying mentally positive is a key to survival. From what I’m reading, I think you’re handling this well with making sure you get daily exercise and grabbing a nap when needed. There’s no shame in napping because it’s important to listen to your body. If she wants to nap, then so be it! ☺️

You’re having blood work next week so best wishes for only good news there! Let me know what you find out, ok?

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Thank you for your encouraging reply. I will keep you updated with my results and appointment next week.

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csanjuan | @csanjuan | Dec 6, 2023
In reply to @hlyonsrn "The fatigue is so real. I was just diagnosed in March 2023. Can't wait to go..." + (show)
@hlyonsrn

The fatigue is so real. I was just diagnosed in March 2023. Can't wait to go to bed at night. Can sleep go 12 hours if nothing to get up for

Jump to this post

Yes, the fatigue is very real. While we are the only ones who understand how real it is, we must keep placing one foot in front of the other. Be encouraged that you are not alone and if you need help, don’t be afraid to ask for it. Small steps in your journey are better than none at all. Thank you for your reply to my story. Stay strong my friend.

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mdterp76 | @mdterp76 | Dec 6, 2023
In reply to @csanjuan "I’m also thankful for this group! My very supportive husband found this for me. I was..." + (show)
@csanjuan

I’m also thankful for this group! My very supportive husband found this for me. I was diagnosed with ET and Jak2 mutation in 2019, but decided with my dr to just keep an eye on it and continued with bloodwork every 4-6 months. (During this time I was helping with my brother who has Mantel Cell Lymphoma. And caring for my mother in law, who has Alzheimer’s.). Fast forward to September 2023, my bloodwork numbers were very high, so my dr referred me to a hematologist/oncology. To date, I have had 3 phlebotomys and take Hydreau (2 500mg) each day. I have also had a bone marrow biopsy, where I am positive for Polycycemia Vera (PV). Tried taking the Hydreau in the afternoon, but was so fatigued I had to take a nap every day. Have since moved to taking it in the evening after dinner. This works much better for me. My numbers are back within range, so no phlebotomy for the last two appointments, but still on the same milligrams. I’m still pretty fatigued, only a nap once in an awhile and I try to walk outside at least 20 minutes when I can. This whole thing definitely brings me down, but I rely on my faith to get me through. My next appointment is next week, so we will see where I’m at.

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I take HU, 500 mg, 2x week, and I am fatigued. I just try to keep going with healthy eating and exercise. It works better for me to plan my appts in the afternoon. I'm 69, ET with Jak2, diagnosed Jan. 2023, but I've been taking baby aspirin for 30 years for "sticky" blood. I take daily baby aspirin and daily iron supplements. I am not anemic, but without iron, my blood work indicates low iron. I drink lots of water and green tea. I drink OJ with my iron. I gave up sodas and most processed food years ago. I am more of a vegetarian and don't eat red meat. I do have shellfish and chicken occasionally.

I recommend joining the free organization, the MPN Foundation. They have great information online and on YouTube. Many free online workshops with doctors and researchers in the MPN field.
Karla

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claire39 | @claire39 | Dec 6, 2023

I take 500mg 5 days a week but that can change depending on my bloodwork

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bluegrasspv2018 | @bluegrasspv2018 | Dec 7, 2023
In reply to @claire39 "Hello Magnolia1949……I too have ET and MPN diagnosed five years ago. I started with 500mg daily..." + (show)
@claire39

Hello Magnolia1949……I too have ET and MPN diagnosed five years ago. I started with 500mg daily and a few months ago changed to five days a week because of anemia and fatigue. Seems to be working okay. I still have fatigue but I think that it is here to stay. I take my meds at bedtime and it helps with the nausea. If have blood work every month and right now my red count is low. I think it is a balancing act with different results every month.
I too am grateful for this site. I do not post often but I check it every day. Good luck with everything…….Claire

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Hello, I do not have ET but I do have PV which is the ugly sister of ET. PV is one of the MPNs. I became a member of the PV club in 2018. I originally took 500 mg of Hydroxyurea "Hydra" that is what my doctor calls it twice a day. My platelets are under control so now I am taking 500 mg only once a day in the morning. I have not noticed any difference. I have super fatigue around 7 pm every day. I eat dinner then hibernate like a bear all night. I plan all my brain-intensive activities in the morning. I go to a gymnasium 3 times a week and feel much better because of it. I volunteer a lot at my military veteran's clubs and stay active. Just turning 65 and plan to be around for a long time. I love to watch the bluegrass grow. Good luck to you from the heartland of America, Kentucky USA.

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claire39 | @claire39 | Dec 7, 2023

Good morning Bluegrasspv2018……I take 500mg five days a week, originally I took 7 but was reduced because of extreme fatigue. It seem to have helped but I still am fatigued more than I would like to be. Every day is a struggle and I usually have to go to bed early, sometimes in the afternoon but I deal with it accordingly. Good luck to you from Ontario, Canada………land of snow and ice, lol………Claire

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claire39 | @claire39 | Dec 7, 2023

Merry Christmas to all who are battling blood cancers and depend on the kindness of others for advice and support. Hugs for the holidays from Claire from Canada

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1 reply
kapow | @kapow | Dec 8, 2023
In reply to @claire39 "Merry Christmas to all who are battling blood cancers and depend on the kindness of others..." + (show)
@claire39

Merry Christmas to all who are battling blood cancers and depend on the kindness of others for advice and support. Hugs for the holidays from Claire from Canada

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Merry Christmas to you too Claire, from your Canadian neighbour to the east (New Brunswick)

I take 500 mg 5 days a week and 1000 mg on Saturday and Sunday. I’m wondering if my fatigue could be age related, instead of a side effect of hydroxyurea…..I am 69, and slowing down in a lot of things, even though I still exercise 4 or 5 times a week, trying to stay ‘fit’. But I have found I can’t do nearly as much as I used to be able to do in the same length of time. Efficiency is a thing of the past! And I need to write down all the chores that I want to get done! 😉 But I have to say there is a feeling of satisfaction when I get to check them off! 😂

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