What was your platelet count before starting Hydroxyurea?

Hello, I am 66 with ET Jak2. Platelets were 809 at diagnosis last January. I started Hydrea in Feb- 500mg and 1 aspirin daily. My platelets are generally about 450. I generally feel ok. I have occasional night issues with bone pain, chills, tingling hands and feet. Take care!

Hi @janemc . I was diagnosed with PV (jak-2 mutation) 1.5 years ago. My onco wants me to go on HU due to my platelets levels fluctuating between 600-800. For now, I've decided to stick to one daily aspirin + like you, (mostly) anti-inflammatory diet and remaining active. I have been practicing daily yoga and meditation for the past 55 years + recently added the gym 3x/wk. It all started 15 months ago, while visiting my native France, I felt unusual tiredness and noticed unusual and painful redness and burning sensations, with some blisters in my toes. This was diagnosed as Erythromelalgia - apparently a common occurence with PV. The condition, however has abated over the past 15 months. No other symptoms beside some probably age-related forgetfulness. I am a psychotherapist and continue seeing clients. My hemato/onco has agreed to let me monitor my blood tests (which I do every 2-3 weeks) and see him every 3 months.

72 years female. I was diagnosed with ET, PV and JAK2 in last January after a heart attack. I had 1100 of platelets. I was prescribed 1000 mg of Hydroxyurea daily and a baby aspirine. First I did not dare to take HU because I scared side effects. But I began to take in mid-February because my LAB results worsened. Early March my platelet count became normal and my hematologist reduced the dose of HU to 500 mg daily, and when my platelets sank to 270, I still reduced a little this dose, car I judged that too low platelets are not good. My hematologist approved this and now I'm taking 500 mg of HU five days a week, and my platelets are below 400 and this is considered good. Side effects I have not much. I should take a baby aspirine daily, but I do not take it every day.

Erythromelalgia that @gajokos describes is common for ET patients, too. It comes and goes. I get flare-ups on palms and feet, usually at night, which interferes with sleep. If you can get a cool compress on the area for 20 minutes and use moisturizer regularly, it seems to help.

Thank you (Jean) m@nohrt4me for mentioning your experience with erytrhomelalgia. I am sorry to hear about your flare-ups. Cool compresses do help. Overall, luckily the inflammation is now minimal for me --except when I go for long rides on my motorcycle and my feet get constricted far too long in my leather boots. Baths are great. I also practice inverted yoga poses a couple of times each day and found that keeping my feet out of the covers at night keeps them cool.
At the risk of sounding somewhat cynical, sometimes I wonder if erytrhomelalgia too disappears for all the folks here who make it sound like HU is some heaven-sent mana that eradicates all symptoms of their blood cancer. Yes, I understand, for many of us HU is still better than risking a stroke, but for now at least I'll opt to stay away from it.

@gajokos Erythromelalgia has been less severe since I started HU, but it might not shake out that way for others, and I don't want to fight about it. I wish that MPN patients were not so polarized about it. We're all doing our best dealing with an ailment that is poorly understood and inadequately explained.

I appreciate the tip about inverted yoga poses! I do daily yoga and qigong (old lady version!) for my scoliosis and will add a legs-up position to see if that helps. I am going in for open heart surgery Thursday to fix a congenital heart valve problem, and hope I can get back to exercising asap. Even a week off and I start to get frozen up.

@jtcat7
I'm sure there are others, but you are the first one I have seen here with initial platelet count higher than mine at diagnosis. Mine was 1.250,000. Doctor put me on HU next day (was in Venezuela and my husband had to drive to a big city to get the HU back in 2015. Late things got much worse as for finding medications. We had to come back to the USA.
During these past years they have crept back up to 900,000 but I am pretty safe now at 450,000 to 500,000.

Yes, my oncologist was surprised also.
I've been told that 450-600 is not bad when the numbers exceeded a million w/o chemo.

Good luck!

Hello!
My platelets were in the 450/470 range. I was very hesitant to start HU.
But the fact that ET could cause blood clots made me make the decision to start the medication.
I started on January 1st this year and my numbers went down within 4 weeks.
I started taking 500 mg 5 days a week and my doctor reduced the dose to 3 times a week once the platelets got to the 200’s.
It’s a very personal decision!

@janemc Did you get off HU, even for a little while to see if your count “stabilized”?