Weighing the Pros and Cons of Hydroxyurea Treatment

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is always at the forefront of my mind.

I’ll contemplate questions like, if I do this activity, how will it affect me? Will it benefit me? What is the potential of having a crisis?

During a recent consultation, my doctor suggested I try taking hydroxyurea to help support my management of sickle cell disease. When I first heard about this medication, I was disappointed because I had always assumed it was used in the most severe cases. It felt as though I had regressed and my sickle cell wasn’t getting any better. In my mind, I had finally gotten to the point where my crises were less frequent.

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The suggestion to take hydroxyurea was a poignant reminder that each crisis takes its toll. My imagination kicked in as I tried to correlate the number of crises and the potential number of years I had lost. There is no such calculation I can do in my mind, but it illustrates how my mind began to spiral out of control. As I was caught in my own world of despair, the doctor continued to explain the benefits of taking the drug.

Studies have noted that hydroxyurea can improve the quality of life of sickle cell patients. The number of crises sickle cell patients have in a year has been shown to decrease over time with this medication. I listened further to the positive stories and the rationale of offering this medication to all adults with sickle cell disease here in the U.K. With this additional information, my original despair changed into intrigue and hope.

Actively listening to my doctor had ended the mental spiral I had ventured on. Being offered hydroxyurea wasn’t a reflection of how bad my sickle cell was, it was a reflection of my own ignorance about what hydroxyurea can do. It was an opportunity to continue to improve upon my current management of sickle cell.

In addition to the drug’s potential benefits, I also listened to its possible side effects in order to have a complete understanding of the pros and cons of taking it. Potential side effects that stood out the most to me are hair loss, darkened nails, and a low sperm count.

A low sperm count would mean I’d be referred to a sperm bank. Testing the quality of the sperm to ensure I would be able to procreate was an element of family planning I had never considered before.

Given all of this information, I was slightly overwhelmed with the decision about whether to start taking hydroxyurea or not. It has taken me a long time to get to a point where I feel in control of my condition. Therefore, I am slightly hesitant to take something that might upset that balance.

However, as with all of my choices about sickle cell disease management, I will take some time to think about it and do what is best for me.


Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

David Isichei avatar

David Isichei

Hydroxyurea was an absolute God send. Before it I had a crisis every 2 -3 months, after it 1 crisis every 10 years if that. Started the programme when I was 19 and I'm now 44, no hair loss and fingernails in tact. The one side effect that you really need to think about before starting this programme is the issue of fertility. While on Hydroxyurea I am basically rendered infertile which has burdened us with expensive fertility treatments. When trying to make a child I have to stop the programme for a painful but inexpensive route. That being said, Hydroxyurea basically changed my life from being so limited on what I could do and where I could go to being pretty much "normal". From swimming in the Indian ocean to snowboarding on the Swiss Alps, Hydroxyurea has made living with Sickle Cell an easy, spontaneous, pain free life.
If the fertility issue could be resolved it would be the perfect solution for Sickle cell sufferers worldwide.

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Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi, David wow that sounds absolutely amazing I'm happy it's worked so well for you! I would love to do the things you mentioned and not worry about a crisis. I am strongly considering it, thank you for your comment!

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Tyrone. Hodge avatar

Tyrone. Hodge

I am surprised that doctors in the UK are so far behind that they have not been prescribing Hydroxyurea for their patients. My spouse has full-blown sickle cell anemia and has been on Hydroxyureqa for the longest while. She is also taking Oxbryta as well. I might also add that she's 72 years old. I'm in no way minimizing the fact that some patients with sickle cell are unaware of their choices in medication. I've been privy to many crises and it's rough.

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Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Tyrone, thank you for your comment. I think you're right that some patients are unaware of their choices in medication. Also, the differences in treatment between countries play a part in what is available.

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Caroline avatar

Caroline

Hi,i am a care giver. I was a regular at our local hospital because my son was frequently going into crisis but from the time he was put on Hydroxyurea. He has improved greatly, so be encouraged and it a try.

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Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Caroline, thank you for your comment. I'm happy to hear that this has worked well for your son. I am definitely very encouraged!

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