Why I Finally Decided to Try Hydroxyurea | Sickle Cell Diaries

For years, I’ve been asked by my consultants whether I want to try Hydroxyurea. I always decline because I was aware of all the nasty side-effects associated with the medicine. So before I explain why I’ve now decided to give the treatment a go, let me first breakdown what Hydroxy is, why it’s used to help Sickle Cell patients and what those nasty side-effects are.

What is Hydroxyurea?

For decades, Hydroxyurea (also known as hydroxycarbamide) has been used in the treatment of different blood disorders.

Hydroxy appears to work in at least three ways:
– It increases the production of fetal haemoglobin. Apparently, this takes some months or weeks to be effective.
– It decreases the stickiness of the young red blood cells. These sticky blood cells cause a sickle cell crisis when they stick to blood vessel linings.
– It decreases the number of white blood cells and platelets.

Why is Hydroxycarbamide used to treat Sickle Cell?

The best evidence that hydroxy works for sickle cell patients comes from studies in America. Studies were carried out to young patients for a period of two years, and significant improvements in health were recorded in about 8 out of 10 patients. These improvements included:

• A longer pain-free period after starting treatment
• Even longer period before the next painful episode
• Fewer episodes of chest crises/sickle cell chest syndrome
• Fewer blood transfusions

What are some of the side-effects of Hydroxyurea?

The side-effects of Hydroxyurea are what really made me hesitant to every try it. Here they are some of the known ones based on research and what my health consultant has told me.

• Stomach Pain
• Constipation
• Diarrhea
• Nausea
• Spontaneous vomitting
• Possible hair loss
• Your nails change colour
• Loss of appetite
• Fertility issues: Makes may find it difficult to make a partner pregnant while on this medication. And even after taking it for some time you could still be affected.
• Possible risk of cancer!

Why have I decided to try Hydroxy?

After reading those side-effects, you’re probably thinking “then why are you going to take it?”

The thing is, people don’t realize how tough it is to live with something like sickle cell. The pain is one thing, and although that’s a big part of my decision, there are more symptoms of sickle cell that have made my adult life particularly rough. For example, a lot of people don’t even consider how much sickle cell affects your energy levels. It’s quite easy to feel fatigued after doing things that are quite normal for everybody else. Low oxygen in the blood means that we don’t always have the energy to be productive. Some days I wake up and feel like I can’t do anything besides lie down or sit down all day. And the worst part is having the whole world view you as lazy because of this.

And then there’s the pain. For the past year I’ve had it quite rough with my sickle cell pains. My right-hip is already damaged from all the sickling throughout my life, meaning I get a constant pain from it. But then there’s also the sickle cell pains themselves rotating around all of my joints, practically all day long.

It seems like getting older is making these pains more frequent. And it’s so rough that some nights I can’t even sleep well. Between the pains and the low energy symptoms, it feels like I’m living in torture. It feels like I’m made just to suffer. And this sometimes makes me wish that I wasn’t even born.

At some point, something has to give. I see the things that normal people my age are able to achieve. Everyone has their relationships and I struggle to find a suitable one because I don’t want to burden anyone. So I’ve finally reached my breaking point. If there’s a chance that Hydroxy may help me, then I’m willing to give it a try for three-to-six months to see whether my life improves. If there are more side-effects than positive results then I will stop taking it and continue to soldier on through my suffering.

My concerns about Hydroxyurea

As I wrote before, those list of side-effects were enough to keep me refusing this treatment for years. I don’t like the sound of any of them. But I’ve reached my breaking point. And although I’m willing to give Hydroxy a try, I’m still highly concerned about it for a few reasons.

For one, I have asked other sickle cell sufferers whether it has helped them. I’ve heard many mixed responses. Some say that they still get sickle cell pains even while on this treatment and that they get more side-effects than benefits. One of them event told me that he stopped taking it completely. I’ve also heard of issues issues with stomach lining and other organs coming from Hydroxy treatment, and this is why I’ll now have to take regular tests to ensure no damage is being done.

It also seems to me that those who really benefit from Hydroxy are the younger sufferers who have been on the treatment since they were children. This likely means that they’ve built up a tolerance to the medication, whereas an older sufferer’s body may be more resistant to the treatment with it being new. That resistance is likely what will trigger all of the side-effects to occur. Keep in mind that the research also focused on younger sickle cell patients, meaning that they were more likely to experience benefits.

And then there’s the low-fertility side-effect. I still have no children. And if I meet the right person for me then it would be nice for that to be an option. And although a cryopreservation option has been offered to me, having a child naturally is obviously the preferred method.

As for the risks of cancer…the leaflet I was given about Hydroxy was very vague about the risk of cancer. The following was written:

We all have a risk of developing cancer during our lifetime. Some medications increase this risk a little, and this is true of a number of medications which work in a similar way to hydroxyurea. However, there is no evidence that the risk of cancer is increased in patients with sickle cell disease.

This doesn’t make me confident at all that using this medicine won’t lead to me inevitably developing cancer. And when they say there’s “no evidence that the risk of cancer is increased in sickle cell patients,” how am I to know that this was even tested?

But with all of this in mind, I’m still willing to at least give Hydroxy a try. When you’ve suffered long enough, eventually you want to make some changes that may or may not help you. All I want is to experience how life is for those without a lifelong illness. And if Hydroxy somehow gives me this feeling, even for a little while, then maybe it’s worth the risks.

If you’re someone who has taken Hydroxy, please feel free to share your experiences below.