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

I am 68, female, have had CALR ET for 13 years, HU for 4. No problems with rx outside of slight hair thinning and soft nails, which could be age or something else. Tried biotin but didn't notice a difference.

Am looking at mitral valve repair at some point. Am hoping to stave it off until I am >70, which would make me a candidate for trans-cath procedure instead of open heart surgery. Your Medicare program ultimately makes these decisions ...

I have intermittent brain fog and fatigue, but better on HU. No one tells you that you might feel *better* on HU. But, then, hemos really don't tell you squat: You're fine, add three more caps of HU per week, I have sick young people in the waiting room, go home and wait for your stroke.

Yes, I exaggerate. Somewhat.

But nobody is going to help you with ET but you. You don't belong in cancer support groups because you have "benign cancer" (a contradiction in terms), and your cancer isn't curable. You don't "look sick," as friends continually tell you, as if you were a fraud. Everyone wants to know "when will you be done with your chemo?" Or tell you to stop taking "poison" and go to a homeopath. And you have to wade thru tons of BS for every bit of reliable info on ET.

I have learned you have to MOVE even if you don't want to. I do yoga 5x per week, which helps. Also have an elliptical machine. Hoping this helps with circ.

Have to say that, on a daily basis, my bad back, bad sinuses, and teeth create more discomfort than the ET. But my dad had ET and, though he died of something else, the HU stopped working and he began to have spleen enlargement, clots, and bleeding episodes. It affected his quality of life the last few years.

So I sometimes worry what's ahead.

Good morning.....I stopped taking Hydrea for all 3 of my covid vaccines, as my doctor recommended but I ended up in the hospital for a week with severe dehydration . I am booked next week to have my fourth and I have not stopped the Hydrea as others on the forum did not stop and had no side effects did your doctor say to stop meds in order to take the vaccine. It is difficult to get any straight answers here from my new hemotologist.
I have been on Hydrea for four years and do have hip to ankle pain off and on but mine is due to sciatic nerve pain. I do have periodic itchiness on skin and scalp, also fatigue. Overall I think I am better for taking Hydrea than not. You may find that your side effects will change from time to time and you may feel stronger sometimes. Good luck and do not hesitate to reach out again

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.

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

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

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

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

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.

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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?