Hydroxyurea side effects

Caring for & supporting a loved one
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Hello everyone,
Thank you to Blood Cancer UK for this amazing resource!

My mother, who lives in France, was diagnosed with Polycythaemia vera (PV) around a decade ago. She started off on aspirin and started on hydroxyurea a few (three?) years ago. Over the last 12 months, her memory has been going and just recently, she has also been having a lot of confusion that appears to be connected to thinking she is in one place then discovering where she really is. I have seen some websites that say that hydrea (the French name for hydroxyurea) can cause these side effects, in addition to numb fingers, pins and needles and itchy skin - all of which she also has.

Does anyone here have similar experiences with hydrea? Has anyone switched to Ruxolitinib with better success?

I am aware that this could also be age related dementia (she is 77) but the sudden dip in memory and increase in confusions are worrying.

Thanks in advance for any advice and sharing
Emma

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Hi Emma i also take Hydroxycarbamide so thanks for posting

Think its important that you convey this information to your mothers Medical Carers…Specialists

Of course it could be age related but whatever reason she should be getting some help.

A change of medication may help her.

Just because she is elderly does not mean she doesnot deserve the are we all get.

My best wishes to you…Lee

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Hi @Emmahibou thanks so much for posting.
You are so right we are such complex beings it is very difficult to know what symptom is caused by what.
I am not a medical person and I definitely think that a thorough medical examination is the way forward.
There are lots of questions like are you in the UK which obviously causes you logistical problems.
Can you act on your mothers behalf or not.
Have you got a language barrier to work through.
Perhaps write down everything you would like to ask a medical person.
All the symptoms you know of, their severity and impact on your mothers life, all her medications, family history etc.
Please let us know how you get on.
Take care of yourself as you are naturally worried by these symptoms your mother has.

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Hi,
I have had lots of hydroxycarbamide ( Hydrea is one brand of it) and the only side effects have been itchy skin, loss of hair ( I hardly even need to shave) and the odd skin cancer. But in 2022 I quite suddenly found my wonderful memory for detail went away and now I cannot be sure I will remember anything within a year. Perhaps this is my version of your mother’s brain problems.
But there are many simpler explanations. We should not put everything down to Hydrea. Old.age, mini strokes, etc are also worth considering

Jumbo4

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Thank you everyone! I have sent info to my father and he will talk to Mum’s physician later in the month. Your feedback is much appreciated.

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