70 + year women with Thrombosis

It sounds like you mean Essential Thrombocytosis, often referred to on this form as ET. It is an unusually high platelet count that results from an acquired genetic mutation. Do you know if a bone marrow biopsy was done? That is typically how a diagnosis of Essential Thrombocytosis is reached as high platelets can be symptoms of other blood disorders. Hydroxyurea is the go-to medication to lower platelets. It is a decades-old drug that is generally well-tolerated and effective. Untreated, high platelets can lead to blood clots forming that can cause stroke, heart attack and DVT (deep vein thrombosis). Not something you want to play around with so taking HU is the way to go. As my hematologist told me, when ET is controlled you can live a long time with it. I'm 69 and was diagnosed last Fall and am on the same dose as your Mom.

Pretty much what debhammel said. 70 yrs, have had essential thrombocytosis x 15 years, on hydroxyurea for 6 yrs.

Important to get periodic blood checks, as this is not a curable condition but can be controlled.

Not a complete cakewalk, but not as bad as many other chronic illnesses. My dad had it. Lived to be 82 and died of something else.

Any one tried any alternative to - HydroxyUrea

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?

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.

Thank you Lori for your detailed guidance and explanation. HU currently she is taking one a day and two every alternative day. But her count in Feb 29, 2024 was around 988, but went up again in May May 9, 2024 -1185. Doctor has advised her to use two HU for a day. But mom complains about stomach upsets and has to drink plenty of water.....

There can be side effects from the HU similar to what you mention, especially when the dosage is higher. The older we get the more difficult it is sometimes for bodies to process the meds. Water can definitely help to flush the meds through the system.

As mentioned by @nohrt4me, some people have difficulty tolerating HU and will start out on lower dosages, working their way to a higher amount. Though your mom’s stomach upset seems to have developed with the increased dosage. This will be a good subject to discuss with her doctor so, together, they can find a treatment that works for her with minimal side effects.

Since her numbers went up while taking HU it might be a good idea to check in with a specialist who works with blood conditions to find the root cause of her increasing platelets. Is she seeing a hematologist for this diagnosis?

Yes, Mon visiting regularly hematologist and he is suggesting to take 1000MG a day of HU.

The LLS.org website is very informative. That's the Leukemia Lymphoma Society. They have such good info and will send you some terrific booklets.

It’s encouraging that your mom is being seen by a hematologist. Often, though knowledgeable, primary care physicians aren’t necessarily the best doctor for treating blood conditions. Since your mom just started taking a higher dosage of HU a couple of days ago, she may need to give herself more time for her body to adapt to the medication. I don’t say this lightly because I’ve had my share of medications over the past few years and the first couple of week of adjustments can be very trying. So tell her to hang in there! 😉
And encourage her to drink that water! I’ve found I’m able to really take in a lot more water if I drink it at room temperature.

Is she taking the HU with food? Other members have mentioned that it can help lessen the tummy queasiness. She might try some candied ginger candy to help with that.

I’m sure her doctor is expecting that with this higher dosage of HU, mom should see her platelet numbers decreasing in subsequent blood work. It can take some tweaking to get a good balance of meds vs return. If her numbers drop appreciably she might even be able to return to the lower dosage at some point.

How often are her blood labs done?