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Any advice for taking Hydroxyurea when you're sick?

Posted by ambervillager @ambervillager, Jan 19 2:41pm

Hi. I've been following this very helpful group since I was diagnosed with ETJak2 last summer, but I've never posted a question before.
I've found many answers to my questions without needing to ask.
But I can't find an answer to this one:
I take Hydroxyurea. Last week I came down with a nasty virus with violent coughing.
I'm really sick and I don't seem to be getting better.
Since Hydroxy lowers the ability to fight off infections, I'm wondering if I should stop taking it until I'm better.
I would ask my doctor but she isn't available on weekends. I don't want to take one tonight if it's going to interfere with my recovery.
Thanks in advance.
Chris

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bluegrasspv2018 | @bluegrasspv2018 | Jan 23 5:49am

In 2018 I was diagnosed with Polycythemia Vera (PV) which is a sister to your essential thrombocythemia (ET). I have been taking Hydroxyurea (HU) for 6 years now. I take one 500 mg every morning. I have taken it every day even when I am sick. I figure blood clots from my PV will not take a holiday because I am sick. I have never had any adverse reactions. HU is an old friend of mine that I believe keeps me from getting those pesky blood clots. So until my doctor says otherwise, HU will be my constant companion. I wish you all the best. Living the wonderous life in the heartland of America, Kentucky

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1 reply
bluegrasspv2018 | @bluegrasspv2018 | Jan 23 5:58am
In reply to @ambervillager "Thanks to katgob and janemc for your responses. I take the HU to lower my platelet..." + (show)
@ambervillager

Thanks to katgob and janemc for your responses.
I take the HU to lower my platelet levels, which are elevated due to the essential thrombocythemia. I ended up takingy regular dose last night.
I'm going to see my GP early this afternoon. I hope he can help me to feel better.
I've only been able to see my hematologist once since my diagnosis - she emails my blood test results to me every 6 weeks.
I actually feel kind of alone with the ET. I often have questions.
There's a tremendous shortage of doctors where I live, and right now the hospitals are beyond capacity with respiratory infections.
I'm lucky to have gotten an appointment so quickly with my GP.
Thanks again for your advice!

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Regarding your feeling alone. in 2018 when I was inducted into the polycythemia vera club I was curious for information but wanted to talk to others who also had our rare condition. My solution was what you are looking at now. This Mayoclinic website has been a great comfort to me. I finally can read and message others who walk in our shoes. I am thankful for this thing called the internet and able to get quality information on our rare condition. I wish you all the best.

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ambervillager | @ambervillager | Jan 23 2:10pm
In reply to @bluegrasspv2018 "In 2018 I was diagnosed with Polycythemia Vera (PV) which is a sister to your essential..." + (show)
@bluegrasspv2018

In 2018 I was diagnosed with Polycythemia Vera (PV) which is a sister to your essential thrombocythemia (ET). I have been taking Hydroxyurea (HU) for 6 years now. I take one 500 mg every morning. I have taken it every day even when I am sick. I figure blood clots from my PV will not take a holiday because I am sick. I have never had any adverse reactions. HU is an old friend of mine that I believe keeps me from getting those pesky blood clots. So until my doctor says otherwise, HU will be my constant companion. I wish you all the best. Living the wonderous life in the heartland of America, Kentucky

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Thank you for this. It was very encouraging to me. I am gradually learning to consider HU as a friend but I'm still learning about it, so it was comforting to read your very positive experience with it.

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ksyren | @ksyren | Jan 23 8:48pm

I would also very much like an answer to this question since we are into the cold, flu, RSV and covid season. My oncologist says though my platelet count is finally down below 450, I'm not immunocompromised, but I didn't think to ask if I should take my HU if I did pick up a "bug."

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1 reply
janemc | @janemc | Jan 24 6:23am
In reply to @ksyren "I would also very much like an answer to this question since we are into the..." + (show)
@ksyren

I would also very much like an answer to this question since we are into the cold, flu, RSV and covid season. My oncologist says though my platelet count is finally down below 450, I'm not immunocompromised, but I didn't think to ask if I should take my HU if I did pick up a "bug."

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Congratulations on lowering your platelet count!!!

Ksyren, are you still taking HU?

When we have ET (or PV), HU helps us in lots of ways. But taking it does lower our immune response.

For those of us taking HU, precautions like mask-wearing in crowded places and frequent hand-sanitizing are very important to stay well.

May I suggest you put in a call to your oncologist, to learn what she or he thinks is best for you, should you catch a bug?

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1995victoria | @1995victoria | 3 days ago

I'm wondering have any doctors warning you against eating grapefruit while you are on HU medication?

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