A little while back I wrote a post on Hydroxyurea, the only FDA approved drug used to treat Sickle Cell. It increases Fetal Hemoglobin , reducing Hemoglobin S (the mutated gene that causes sickle cell) which reduces the number of sickled red blood cells. I have seen a lot of hatred towards Hydroxyurea on various Sickle Cell websites/groups. I personally do take Hydroxyurea and it works pretty well for me (it has been 8 months since I have been in the hospital and in a serious pain crisis). I decided to get REAL testimonies from my fellow Sickle Cell Warriors on their experience with Hydroxyurea. I posted in a Facebook group I am apart of called Sickle Cell Unite and asked for people to share their experiences good or bad with Hydroxyurea.
Unfortunately and FORTUNATELY there where not many bad experiences or objections made on my post! Some objections that I commonly hear is that
"it wasn't made specifically for Sickle Cell but for Cancer" YES i am aware of this, as all are that take the medication, but just because something wasn't made with a certain function in mind doesn't mean it wont work! I am grateful that they developed this medication and found out that it could help us with Sickle Cell because without it I couldn't do 50% of the things I can do now. Another, is usually
a type of complaint about side effects. YES! There are minor side effects that CAN happen but do not ALWAYS happen( they did not in my case and many others). Regular doctors appointments and blood work help to ensure that nothing will go wrong while you are taking Hydroxyurea.
My Personal Hydroxyurea Story: It wasn't until about 6th grade when I really started to get frequent major pain crisis. This is also when we discovered I had Avascular Necrosis(which I will be talking about in a post soon). MY Hematologist recommended that I start using it but didn't push the issue until after my hip was healed from surgery. I started to take Hydroxyurea in the end of my seventh grade year and would REFUSE to take it, hiding pills and all. I am not sure why I didn't want to take the medicine but at that young age I didn't fully understand that these few pills everyday could make my life so much better. I would still get in major pain crisis and didn't really get serious about taking my medication until i had one of the worst pain crisis of my life, I was in so much pain I wanted to to die. I realized that I didn't want to suffer anymore and gave it a shot I began to take my medication regularly and it has been nothing but great for me. I KNEW Hydroxyurea worked for me when I would miss a day or 2 and be in pain INSTANTLY. I have now been taking it properly for about 3-4 years. I do not get as many major crisis (unless from an outside trigger), I have more energy and a better outlook on my life. SURE, I still have good days and bad days but I am glad that I started to get serious about my health and decided to take Hydroxyurea.
Now to get to the fun part! This is the first time but CERTAINLY not the last that I will be featuring others on my Blog. Below are statements, from fellow sickle cell warriors who have a first (or second hand) experience in taking Hydroxyurea.
"Hi Morgan, my daughter has been taking it for 9 months now and I can say that she hasn't had a crisis since she started it. She hasn't felt sick or had any kind of pain. She has gotten a lot of energy and it gave her a confidence boost. So I am actually thank full that she finally started using it."
- Carin Daflaar
"My 2 year old has been on it since he was 9 months old. No crisis and no side effects!"
- Debbie London
"It was rough for me to get adjusted in the beginning. My body went through some pain still the first couple of months. They said it would halt my growth a little bit, which I think it did. I'm still the same height I was when I started taking the meds I think. The good thing is once the medicine began to take hold, I have had very few pain episodes as opposed to before taking. Basically, when I began to do what was suggested by medical teams, I had less issues. That's not to say that I take every suggestion because I don't. Managing sickle cell is a process. Listen to your body"
- David Woods
"Hi, I've been on it for about 2-3 years and I haven't had any side affects either, I've heard of some people having their hair fall out, having bad cough, and making them sicker but I'm just over here like I'm fine lol but it's true everyone is different I'm lucky I don't have those kinds of side affects! I don't really like taking pills because I take them so much but if it keeps me healthy and pain crisis free for a while I suck it up, just take it and get it over with in the morning haha the only thing I don't like about the pill is that it kinda tastes weird like when you first put it in your mouth that taste from the pills shell kinda has a fishy after taste but it goes away after a while. But yeah it works wonders for me I haven't had a really bad episode in a long time, yeah I still get certain pains but that's because we have the full disease and not the trait so of course were still gonna get pain every now n then ya know but it works great for me, only time I have really bad pain is when I forget to take it lol🙈 and I regret forgetting to take it every time haha but I like it and I'm glad my doctor told my mother about it so I could be pain free and live a somewhat normal life! I can go swimming more, I can workout more and do regular things with my friends without having to worry if I'm going to get sick! My dad calls it the sickle cell wonder drug lol it really kinda is when it works and agrees with your body because it has really worked wonders for me!"
- Tykisha Lebron
"Hello, I'm 33 going on 34 in October & I've been on it for about 3-4 yrs; when I first got on it my nails darkened & my hair started falling out, which is the reason why I'm natural now.. It took a minute to get use to it & although my crisis & hospital admissions have decreased; I'm still in pain everyday & I still have ER visits a few times a yr (by the way I'm in the ER now getting treated for a pain crisis) & this yr alone, I've already had 4 admissions ( but this yr has been rough for me). So, yes I love that my hemoglobin is up now & grateful for the less admissions & ER visits but I wish it had me not in pain & with less issues; but I know it works differently for everyone."
- Connie J. Ebron
"My son has sickle cell disease, and he use to take hydroxyurea prior to his stem cell transplant. We didn't see any side effects, he recently did his transplant on the July 28th and is now recovering. We are still in the hospital almost 3 months now but looking forward to going home soon. When having a stem cell transplant done they treat it like cancer and Hydroxyurea is also a cancer medication, you get chemo treatment and radiation treatment also. My son got very sick after doing all of this he also get a seizure which was very scary cause it's my first time seeing it .He's doing much better now thank you Jesus, the worst has passed and the best is yet to come, behind every dark cloud there's a sliver lining."
- Tammy
Another THANK YOU shout out to all my warriors who contributed their stories.
Suffering in silence dosent help any of us and I am happy you decided to share your stories with my blog following and myself.
Stay Strong,
Morgan<3
