How fast do you start to feel hydroxyurea symptoms?

I was diagnosed with ET and put on 500 mg a day to lower platelets from About 530. I was immediately adversely affected with extreme fatigue and major hair loss. I told my dr I wanted to lower dose or change meds. . He said no. I did it anyway and found a new dr—a specialist in myelofibrosis which is what my initial Dx had progressed to after a bone marrow biopsy and bone scraping.
I stopped taking HU for a while and yes platelets rose to 610. So with new dr agreed to take 2 a week and platelets went down to 460. Hair loss stopped when HU stopped. Hair loss resumed at a much lower rate after resuming. And now seems to have stopped.
My take so far is you have to have a say in how meds affect you, and I don’t think anyone,even specialists, can predict exactly if and how meds like HU work. For me, I’m 84 and otherwise healthy. The hair loss is a nonstarter unless someone can convince me 600 platelets will do me in sooner than Father Time.

I get a CBC and a ChemPanel every 3 months. Then I meet with my local hematologist to review my results and treatment. I also get my LDH (lactate dehydrogenase) tested then.

I am 65 years old and I have been put on 500mg Hydroxyurea in the past one week. My platelets have been high since 2021 and by last month they were 900. I have been on aspirin 100mg in the past 4 months.
So far i have noticed i feel tired and foggy in my head but these feelings go away after some time.
I am also battling chronic kidney disease, diabetes, hypertension and now ET.
Great to be in this great support group and I feel really happy reading all the comments and the positive vibes coming from all those that have been having ET for longer periods than us newbies.

every 3 months

Husband Joe has PV AND is still taking Jakafi 5mg twice daily. His platelets are still over 350 but came down to low 600's. from the 800's. He had bad reaction to Hdroxyura. It as been almost 3 months with Jakafi. Joe seems just exhausted most of time. He has lost much weight. He is 144lbs. He's always been 155-165 range. He looks like shin and bones. His mind is foggy at times and sluggish. He stays in bed a lot. He has trouble sleeping. He does walk are dog and mow grass on riding mower. He will push mow some but he gets winded and just worn out quickly.
I personally just wondered if pills make him worse. And if he would be better with dietary solutions. He doesn't eat much. Lately it's cottage cheese and beats. Chicken noodle soup and lots of garlic, fish green beans. Or a hot dog. Once in awhile. No big portions. I miss the guy he was full of live and energy more then most 77 year olds. Any thoughts out there. 🙏

Good morning, @onthejoedock. These are lovely photos of your handsome husband…so active and vital. But the latter photos certainly tell the story of how things have changed with his health. It is sad when we see our loved ones go through a life altering experience. It can be difficult to cope with for both of you.

I’m a little confused though as to whether your husband has PV, which is a blood condition where the marrow is producing too many red blood cells. Or if he has ET (essential thrombocythemia) which is a condition where there is an over production of platelets. You focused on his platelets. Was his hemoglobin high as well?

Both conditions are treated similarly with hydroxyurea or Jakafi with the goal being to help the body regain a normal production of the excess blood cells.

You also mentioned that his platelets are “still over 350”. (350,000) That’s actually well within in the normal range for adults…normal being 150,000 to 450,000.
So if the focus on taking Jakafi was to lower his platelets that has worked very well for him.
But it will also lower his red blood counts which can lead to fatigue and being easily winded because there is a reduced amount of oxygen being distributed throughout his body. That would explain why he gets worn out so quickly. It’s a horrible feeling and no matter how hard he tries to push himself it will just end in frustration because he may not have enough red blood cells. (Think anemia)

If he has ET, since his platelets are now normal, he may want to check with his doctor about potentially lowering the dosage of Jakafi. There are a number of members in this group who have PV or ET and when stabilized, they’ve been able to reduce their dosages, such as 1 tab daily instead of 2. Or, alternate between 2/1 every other day. That may make a difference in your husband’s fatigue and lethargy.

While nutrition is important for his overall health and wellbeing unfortunately, when there is a mutation causing a blood condition such as PV or ET, a dietary solution won’t reverse this myeloproliferative disorder.

I’d encourage you and your husband to talk this over with his doctor about possibly adjusting a dosage to see if it might make a difference for him. What is his current hemaglobin reading?

His hemoglobin seems to be fine not sure why they said PV. I think one time it was a little high. Maybe we see the daughter on the 18th of this month hoping to discuss all this with him because I'm feeling like I don't know if he even has anything in 2022. His platelets weren't high at all. Is this something that could happen like late in life or is it just some fluke thing happens and it goes back down? I'm not sure that really confused but thank you so much. Really appreciate your response. Makes you think if you have any other thoughts love to hear them.

I meant we see Doctor on June 18

Joes jog for long time:

I meant Joe's HBG LEVELS FOR AWHILE.
THANKS