Hydroxyurea Reaction

Posted by btwheels @btwheels, Feb 9 1:38am

My wife, Pam is recently diagnosed with ET.
Three weeks ago she was out on a fairly high dose of HU(2000 mg/day) because her platelet count was over 1000!
Her count dropped from 1019 to 308 in 2 weeks, and last week her Dr. told her to discontinue the medication for one week to see how how blood count would react, and hopefully stabilize.
Today her platelet count was down to 78, which is way too low.
She has to go for an ultrasound in the morning as she is worried about swelling and some discomfort in her ankles/lower calf area.
Has anyone dealt with such a radical swing in platelet count?
Of course we are concerned about a bleeding situation if her platelet count doesn’t stabilize . .

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

hariom1961 | @hariom1961 | Feb 9 4:44am

Dose seems to be high but dr must have given her as needed seeing the patient . My platelets were 1100 and was give two capsules of HU 500 daily for a month and then reduced as per platelets reading .
As platelets have gone quiet low just see if water intake is increased and juices too such as beetroot / oranges / apple etc are given which suits her to remove strong effect of HU . But confirm with your dr even as he will surely guide you properly . Wishing you speedy recovery

nohrt4me | @nohrt4me | Feb 9 11:15am

I'm confused. Was the ultrasound for leg issues ordered by the hematologist because he suspects they're related to ET? A clot? Or reaction to the HU?

Different people respond to HU at different rates. It took over a year of gradually increasing doses of HU for me to go from 800s to 400s. Other patients drop to normal in a matter of days or weeks.

Doctors may start patients at very high doses like your wife's if they suspect a complication (like vonWillebrand's which causes bleeding) is brewing. Or they may feel it's vital to get platelets down asap in patients at high risk for clots. Might be helpful to know why the doc prescribed that dose.

If it were me, I would call your wife's hematologist today, report the low platelet count, and loop him in on the leg problems/ultrasounds if he wasn't the one who ordered them. Then ask what you should be doing about the low platelets.

If your wife is being treated by a doc who is not a hematologist, please ask for a referral to one while you are on the phone. You can just say, "We'd like to see a hematologist. Could you help us find one who will communicate well with both you and us?"

Doctors, even MPN specialists, can be really poor about providing info, and appt times are iften limited to 20 minutes. They may spend 5-10 minutes reading your labs and tests. So it's good to make a list of your top three To five questions before you go in. Maybe:

--How much HU should I be taking to maintain an acceptable platelet dose?

--How often should I get blood monitored and see you for routine visits?

--What symptoms or side effects should I report to you right away?

--Am I at high, moderate, or low clot risk given my age, clot history, and driver mutation?

--Any lifestyle changes I could make to help my overall health?

Please let us know how this shakes out!

Colleen Young, Connect Director | @colleenyoung | Feb 12 9:30am

@btwheels, how is your wife doing?

btwheels | @btwheels | Feb 14 7:15am

Hi Colleen,
Thank you for asking!
She is doing well, feeling well.😀
She is still on break from the HU, and we have an appointment with blood work tomorrow, so should know new numbers then.
Assuming we will start again with a low dose.
The Dr mentioned that she might be a cross over between ET and PV, so we’re not sure what that means?

Brad

Please sign in or register to post a reply.