← Return to 70 + year women with Thrombosis
Discussion70 + year women with Thrombosis
Blood Cancers & Disorders | Last Active: May 14 1:08pm | Replies (17)Comment receiving replies
Replies to "Any one tried any alternative to - HydroxyUrea"
Dad tried anagrelide. It didn't work as well as HU and caused heart arrythmia. At that time Jakafi and Pegasys had not been "invented."
Jakafi causes significant weight gain. Peg has caused depression in older patients, though lower dosing may help with this. Both Jakafi and Peg are thousands per month and off-list for ET, so insurance may not pay for those if HU will work.
Bottom line: HU still seems to be the best drug for the elderly.
Some people refuse to take HU because it's oral chemo therapy. My doc told me people can take it for 20 years. I have not had any side effects from it outside of thinning hair and dry skin, which may be as much age-related as anything. I did find that it actually helped with fatigue.
But some patients can't tolerate HU. Starting on a low dose and adjusting to find the lowest effective dose for patients seems to reduce side effects. I started at 500 mg per day. After a year, that was increased to 1000 mg on M-W-F. But some folks on here are starting out on much lower doses.
Hopefully, your mom will talk this over with her doc and share concerns.
Hi @rch552320 Your mom was recently diagnosed with thrombocytosis which is an excess of platelets in the blood. This can lead to concerns for blood clotting and strokes.
There can be underlying causes for this to take place so I’m wondering if your mother had further testing done by her doctor to determine the cause. It might be warranted to have a genetic test run to see if there is a mutation in the JAK2 gene.
In any event, Hydroxyurea, is generally the front line med to treat this condition to control the excess production of her platelets.
There are other medications for people who are not tolerant of HU if needed. Is your mom not doing tolerating the HU?
I found a conversation with other members who have Essential thrombocythemia and are taking either Jakafi, Anagrelide or Pegasus for ET management. Here’s a link to that discussion with @lynnevb and several others.
ET management, Is anyone here taking Jakafi or Pegasus?
https://connect.mayoclinic.org/discussion/et-management-is-anyone-here-taking-jakafi-or-pegasus/
Because you and your mom are new to this, I thought you might like to have a little more information about ET. Here are a couple of sites for you to investigate.
~From Verywellhealth.com
https://www.verywellhealth.com/essential-thrombocythemia-2860907
~~~~~~~
From Healthline.com https://www.healthline.com/health/primary-thrombocythemia
Is your mom having any side effects with taking Hydroxyurea?