How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

After 3 yrs on hydroxy, WBC 4.0 RBC 3.8. I'm taking 1,000 mg daily. When my platelets dropped below 500 my hema cut back on the dosage and it hit 760 after 6 weeks. My retest was delayed by Ian, hoping I'm near normal again.

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20 years to this existing discussion:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

I did this so fellow members like @pearly @lzimmerman @betherelynda @claire39 @nohrt4me @huronshores @markdi @dwlowrance @wa34937 @stevehurlburt would see your post and you can connect with them more easily.

Kathy, has something else in your health changed recently? Did you doctor order another round of blood tests to see if this may have been an anomoly or lab error?

I’ve been on Hydroxyurea for 20 years.
Last Friday I had bloodwork which showed my white count at 2.2 and red count at 1.9. Other Value vet so we’re also very low.
What’s up with these results?

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Beware, folks.

I have been on many info/support groups for MPN patients. Most of the people making claims about herbal treatments are people who sell supplements and are looking for scared patients to exploit.

The fact that they throw a lot of scientific gobbledygook at you without telling you what journal it comes from is a dead giveaway.

Herbals are expensive, and insurance won't pay for them because the tests have not been performed on people, and they are not FDA approved.

Discuss alternative treatments with your doctor.

Thanks Lynda....I will let you know how it goes

I haven't had any itchiness at all. I'm less than a year on this journey, so I truly appreciate hearing from you now that you're four years along. I didn't stop the Hydrea when I had my vaccine, and didn't have any reactions, but I know every body responds differently. I'll pray that you have peace with the decision you make, and that you will remain healthy either way.
Lynda

Thank you for your response. Do you have any itchiness at all.
I go next week for my 4th vaccine and I really cannot decide whether I should stop the Hydrea so I guess I will decide last minute. I wish you well on your journey through this......Claire

Thank you so much for your input Claire! My doctor did not have me stop my med for my covid vaccines. I'm sorry you ended up in the hospital when you stopped them. Luckily, my illnesses, when I stopped, caused me to focus on hydrating myself, so I didn't have that happen.
I have also had sciatic pain, but had it years before I was diagnosed. I wonder if it is related at all to ET?
Thank you for letting me know that side effects could change. I won't be caught off guard if that happens.
I so appreciate your reply! Thank you!
Lynda

I did not stop taking Hydroxyurea when I had knee surgery nor for any general illnesses with one exception. Once when I became ill with an infection in my fingers and having flu like symptoms (not Covid as I was tested 4 times), my white count got quite low. So, I was taken off Hydroxyurea for a short time until my white count came back up. I am doing just fine back on it. My doctor was not concerned with me being off of Hydroxyurea, nor continuing it during surgeries or general illnesses. I have not experienced Covid yet, so I cannot comment on being advised to stop or continue Hydroxyurea in those cases.

The conclusion for my one time exception was that I had an allergic reaction to the antibiotic medication which caused my immune system to fight both the infection and the allergic reaction causing my blood counts to get too low. Since I also broke out in hives and had major itching, that made sense.