Anyone else find the side effects of Hydrea 500MG frightening?

@cetzler
My dose has not been lowered...possibly because I am 72, my doctor feels I am at greater risk.
My highest platelet numbers were 536, now they are around 230.
I know some people take the 500 mg 3 times a week, but I take it every day. I am blessed because I have had no negative side effects and many people can tolerate it well. Apparently children with sickle cell anemia take it without any issues .
Again...if I may suggest, pray about it, and do what you and your doctor feel is best.

@jbcl thanks for your compassionate reply. May I ask what your platelet count was when you started on the 500mg of Hydroxyurea ? Has your dose been lowered now that your platelet count is back in the normal range?

@cetzler
I know this diagnosis can be surprising and very scary. I was diagnosed at age 71 with no symptoms except a climbing platelet count.
After consulting with a hematologist/oncologist, and hearing the possibility of blood clots and stroke, he diagnosed daily baby aspirin and 500 mg hydroxyurea. I continue to feel no symptoms, but after 6 months, my platelet count has dropped into the normal range.
Do research, and read the comments on this website, which are very helpful and comforting.
Only you can decide what is right for you. May God guide you in your decision.

@cetzler

nohrt4me makes a great point.

Ask your daughter how many patients she knows with ET.

Then ask your oncologist the same question.

Please remember, you're among friends here.

You must find your own way forward, but you are not alone.

@cetzler I have had no side effects except constipation and very mild hair thinning. The hair thinning reversed after a few years. This is not "I have bald spots!" thinning in my case. I was having severe fatigue before starting HU. I felt better after I started it.

Other people have nausea, insomnia, or diarrhea. My doc prescribed Compazine (anti nausea) for me with HU, but I never needed it.

Starting HU as soon as it is warranted and at lowest possible dose, increasing only to whatever keeps you in stable is what most docs do, and this gives patients time to acclimate. If you wait to start HU and let platelets run high, a doc may start you on a higher HU dose, which you may not tolerate well.

Any platelets over 450 can be "dangerous" depending on mutation type, age, and clot history. Yr doc should be able to give you Vegas odds on developing a clot if you don't take HU vs if you do. There is statistical research that shows people on HU have fewer clots and live a normal lifespan.

My dad also had ET. No one knew it until he had a leg clot. He had to go on coumadin, which threw him in the hospital a couple times for internal bleeding.

I get why your daughter is nervous about HU. It has a scary "black box" warning. The big question is whether YOU feel nervous about it and whether you think your daughter has more experience and knowledge than the doc who wants to prescribe it.

There are alternatives to HU--anagrelide and Besremi. Besremi is usually rejected by insurance for ET patients because it is super expensive. But if you are rich or have great insurance, you could ask yr doc about that.

Fwiw, I have family that gave me a hard time about my treatment. But it's not their body, and I am glad I chose the options I did.

@nohrt4me my daughter is a nurse who doesn’t want me to jump into anything with so many possible side effects, without looking at different options. Are platelet counts in the upper 500s super dangerous? What were your counts when you started treatment? What have been your side effects over the years? Thanks for responding to me!

@cetzler Welcome to the club no one wants to be in!

What "natural treatment"? I've had ET x 18 years, and there isn't a supplement or diet that addresses out-of-control platelets caused by a genetic mutation, though I've seen claims for everything from CBD oil to cinnamon to personalized IV infusions.

Some people right after diagnosis do feel they need to at least try an alternative treatment before they agree to HU. If that's what you decide to do, it's a good idea to let yr doctor know that's your plan so that you can be monitored appropriately.

Your oncologist will assess your need for hydroxyurea based on age, mutation type, and clot history. Docs may also look at your family history for types of strokes, heart attacks, and clots.

Doc will prob also recommend a daily baby aspirin, which reduces clot risk.

You *can* benefit by a heart healthy diet and appropriate exercise that will reduce over all stroke risks. Get a handle on weight, hypertension, and cholesterol if you need to.

Hello cetzler. An ET diagnosis is shocking. Who even knew you could have too many platelets? You must have a million questions.

I'm so glad you've found this forum. You can learn so much here. Best of all, you'll meet people who have lived strong with ET for decades!

But to make a treatment decision, you must rely on your oncologist. Ideally, she or he specializes in MPNs. If not, you may wish to seek a second opinion. ET is so weird that many doctors don't understand it at all.

With ET, a genetic mutation disrupts blood cell production. No food or supplement can undo that mutation.

Expect to be confused as you learn more. But you will find a way forward!!

Hello, I just joined the Support Group today. I was diagnosed with ET yesterday. I tested positive for the JAK 2 gene. My platelets counts are in the upper 500s. I am 61, but am otherwise healthy with no risk factors. Do you think I need to go on Hydroxyurea or can I try a more natural treatment?

@ladyplumber7 Hello. Sorry you’re feeling so miserable and concerned. I have taken 1000mg of HU daily for over 5 years. There are side effects, mostly fatigue, that I attribute mostly to the HU but, at almost 79, some of those side effects I know are just from getting old.
There day I had the bloodwork done that let to PV diagnosis, I had some terrible pain in my knee and that was gout that was also found that same day.
I take allopurinol for the gout and, for the most part, have had very little to complain about.
I agree that you need a really good GP who can tie all your health issues together and help you decide the best meds and course of action for you.
I work on the theory that “God helps those that help themselves” so don’t give up. You just need to find a provider that listens to you, treats the whole person and makes up a program that actually helps.
Also, I know that diet and exercise can be critical to your overall wellbeing when you’re on HU.
Please, if you can, let us know how it goes with that second opinion,