My Experience With Hydroxyurea

I didn’t know anything about hydroxyurea (hydroxycarbamide) until last year. The government gave out a few for free and I had no idea. Maybe because I stopped looking for a solution to my problem. Then I met someone on Facebook who introduced me to the medicine and offered to pay for it for me. So I agreed to use it.

Getting hydroxyurea in Ghana

Because of the hype I got from a lot of people who used it, I was certain and excited that this was finally my solution to sickle cell.

Getting a prescription and the drug was a long process because it was hard to find and very strong. I underwent a series of tests that different doctors had to analyze before I passed to use it. I finally passed and got my first month's supply of medicine after what seemed like forever to me.

My hydroxyurea experience

I was supposed to take 1 gram once a day. Because I didn’t want to miss any of the doses, I set a reminder on my phone so I never forgot.

Initial improvements

After the first 2 weeks, I saw improvement in my hemoglobin and generally started feeling better and stronger. I was able to do most activities without feeling the normal extreme fatigue I usually felt. So I was in high spirits and wanted to start preaching hydroxyurea to others, but something told me to wait until my second month, so I did.

Things take a turn

After a month and 2 weeks, I didn’t feel as good as before. I started having heavy breathing and hallucinations but they were subtle. Honestly, I didn’t even realize the hallucinations until later. I got a crisis and reported it to my doctor and newfound Facebook friend.

My doctor prescribed some pain meds and sent me on my way. My Facebook friend was however convinced that I was not taking the meds on time and that that was causing the crisis. According to him, if I was taking it on time, I shouldn’t be having any crises. Believe me, I was confused because I took it on time as much as possible because my phone reminded me.

Well, when the pain continued and I had to increase the doses of pain meds, I thought to myself it was the hydroxyurea, but I knew no one would believe me. So I discontinued taking it without telling anyone. I became my doctor. When I started feeling better after a few days of not taking it, I thought it was okay to go back to it because I was fine. I also wanted to prove to myself it was the hydroxyurea, so I went back to it. That was when heaven broke loose on me.

Unexpected complications

I couldn’t find sleep for 3 days continuously. This had never happened to me before in my over 25 years of having sickle cell. My dad finally said that the cause was the cannabis I was using for pain. I knew it wasn’t the cannabis because it had never done me like that. If anything, cannabis rather calms me and helps me eat and sleep better. He was coming from the African perspective of weed that it makes people mad which is not true. I didn’t want to drag the issue with him so I said nothing.

That evening, I started talking a lot, roaming about and shouting saying worded stuff, and hallucinating. I couldn’t even stand the rotation of the fan because I felt like it would fall on me. I knew something was wrong with me so I kept asking my cousins to take me to the hospital. They did once they finally saw that something was indeed wrong.

Hospital stay

At the hospital, I did a lot of strange and weird things that only mad people do. They eventually tied me to the bed because they couldn’t make me stop.

Well, long story short is that I nearly went mad and although the doctors and nurses are still convinced that it is the weed and my painkiller pethidine, I am certain it is the hydroxyurea.

When I got discharged from the hospital and finally had access to my phone again, I started reading more about this medication. That is when I read the part about the rare side effects like dizziness, headaches, drowsiness, disorientation, hallucinations, and convulsions. I could finally prove that what I experienced was from the hydroxyurea and not the weed or pethidine.

Just because it says it’s rare doesn’t mean it never happens.

Not every drug works for every body

Why am I talking about this? I need people, especially warriors all over the globe to know that, not all sickle cell drugs will work for you just because it works for other people. In as much as we all have sickle cell, our makeup differs from one another. Learn to accept your differences and embrace them.

Till now, I’ve not found any sickle cell drug that works for me and that is okay. Maybe I will someday or maybe I won’t. I accept that I’m not like every sickle cell warrior out there and so should you.