Why I Stopped Taking Hydroxyurea for Sickle Cell
Earlier this year, I documented my reasons for agreeing to take the Hydroxyurea treatment for sickle cell. I explained the reasoning for finally going on the treatment, as well as explaining my concerns. But after a good month of trying out the treatment, I was forced to stop taking it due to serious complications. Here’s my explanation of why Hydroxy didn’t work for me.
Please note: The information in this blog is based on my own experiences and shouldn’t be taken as medical advice. Everyone’s experience is different, especially in the case of using Hydroxy.
Why I Stopped Taking Hydroxyurea for Sickle Cell
When I first started my Hydroxy treatment, I had no idea what to expect. I’d read up on all of the side effects and I felt like I was waiting for any signs that they would kick in.
On my first day taking the treatment I remember having a strange taste at the back of my throat. And then, I began to feel slightly nauseous. I also experienced a weird fuzzy feeling inside.
The pain in my hip remained. Something that still affects me on a daily basis. But it was highly unlikely that my sickle cell crisis pain would disappear after one day on the treatment. My consultant told me that it could take weeks or months for the effects to kick in. But there was one specific problem that would prevent me from ever finding out if that was the case.
Neutrophil problems
After two weeks on Hydroxyurea, I went in for a blood test to find out what effect the treatment was having on my blood. It turned out that my Neutrophil white blood cell levels had dropped down significantly, making me even more vulnerable to fever and infections than usual. Not good to hear during a pandemic.
I was asked to come in for another blood test the following week to see if the Neutrophil levels would normalise, but the results of that test showed that they dropped even lower.
I was then instructed to stop taking Hydroxy for a week and then take another test.
After a week of taking no Hydroxy, my Neutrophil levels returned to normal. My hematologist then asked that I take the same dose of Hydroxy (which is the lowest dose) but this time around, I was to miss taking them on the weekend. This meant that I was to only take the Hydroxy Monday-Friday.
I followed these instructions and took another blood test the following week.
A calculated decision
After this final blood test, I didn’t hear back from the hematology department at my hospital. The main hematologist that I usually spoke to was on holiday at this point, and I had been in contact with the secretary when I’d learned about my Neutrophil’s tanking. But now, after following the secretary’s last orders, I could no longer get in contact with anyone to find out the results of the latest test.
I tried calling the department but was met with an endless ringing that led to the call going dead each and every time. I had no way to tell if my Neutrophil levels had dropped again, putting me at risk. And I was starting to feel more and more side-effects from Hydroxy every day that I took it.
So I made the call to stop taking it.
I made the right call
I eventually got in contact with a local sickle cell specialist nurse in my area. I caught her up with what had been happening with my treatment and she agreed that I made the right call to stop taking the treatment.
Sometime later, an appointment was booked with my usual hematologist and she confirmed that even after the adjusted hydroxy schedule, my Neutrophils had dropped down again. I was already on the lowest dose that could possibly be effective, so lowering that dose would render the treatment useless.
My hematologist explained that based on how my blood responded to Hydroxy, it makes sense to end the treatment and explore other means of treatment.
A new sickle cell method of treatment to consider
I was now back to square one. Experiencing crippling pains and relying heavily on medication and pain relief. My hematologist told me that the next thing that could be considered is blood transfers, in which I will be reliant on blood donors. This option will help to dilute the flawed sickled blood cells that cause my problems, but only for a small window of time.
If I go ahead with this option, I will need to keep going back to the hospital to receive new blood every few weeks. And again, this is entirely dependent on the availability of blood that matches my blood type.
I have been given information leaflets now so that I can think about this option. There are many pros and cons to it, and I’ve heard a few horror stories already.
Recently, a new type of drug was announced that could help sickle cell sufferers experience less crisis, but this treatment could be a few years out still.
Much to consider
There are a few other complications I’m experiencing thanks to my sickle cell that I’ve yet to write about. And these complications might require surgery in the near future. With that, there’s entirely too much for me to think about. And the possible implications of the surgery as well as the blood transfers can be somewhat daunting to think about.
I’ll end this off by urging my fellow sufferers to speak up and share their experiences with one another. It’s important that we all realise that we’re not alone. Because when you’ve experienced a life of suffering, there are very few people that really understand how it affects you on an everyday basis.
If you have any experiences with Hydroxy or blood transfers, I’d love to hear from you.
Please note: The information in this blog is based on my own experiences and shouldn’t be taken as medical advice. Everyone’s experience is different, especially in the case of using Hydroxy.
