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Why I Don’t Take Hydroxyurea

PS 2013 update by SCW: The following is my own personal first experience with Hydroxyurea. I eventually ended up taking it for 6 months a year later, to no avail and really bad nausea/vomiting. However, Hydroxyurea does work for some people, and has to the ability to drastically reduce your pain crisis episodes, improve your blood counts, and quality of life. This is based upon my own personal experiences. You should use your own discretion and the advice of your physician.

Last year, after numerous bouts of falling sick, my doctor practically ordered me to give Hydroxyurea a shot. Also known as Hydrea, this is one of the medications that has been known to reduce the incidence of sickle cell crises’. When she explained it to me, it sounded good, but as soon as I had the script filled and in my hands, I started trembling.

For some reason, my skin crawled and I recoiled from accepting the two large canisters for 300 pills. I had done my research, and the list of side effects was monstrous, however she assured me that ‘most people don’t have side effects.’

I got home and Norio and I read the whole packet, front to back, and the more I read, the more discouraged I got about taking the medicine. Developed originally as a chemotherapy drug, Hydrea has the potential of preventing crises by actually killing off the neoplastic ‘sickle cells’ and prevents the developed ones from taking the sickle cell shape. Since it’s the clumping of the shape that causes a crises, it’s been known to reduce crises’ by as much as 50%.

Except it’s a cancer drug.

It’s a cancer drug. Ick, ick ick! That alone comes with it’s own list of complications. The list is so long it’s atrocious to call it a medicine. I was having thoughts of my hair falling out, horrible GI symptoms, nausea, vomiting, dehydration, exhaustion, more anemia, constipation, diarrhea, skin turning pale, insomnia, cough, soreness, fever, chills, back pain, black tarry stools, bleeding, confusions, convulsions, seizures, blackening of nails, sores in the mouth, fatigue, itching, numbness & tingling. And that was just the stuff that didn’t sound deadly.

I just really felt so scared to take it. It seemed like I would be putting poison in my body to try and rid me of this ailment. There had to be another way—there just had to be. Norio and I prayed fervently for some conviction before I even tried taking it and for some reason, the only one we got was a strong reaction NOT to take it.

I know that Hydrea has worked for some, and many will laud it’s apparent helpfulness. But those two canisters sit at the back of my closet, untouched and unopened. This warrior has spoken.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin’s message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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15 Comments

  1. Tahira Givhan
    Tahira Givhan June 11, 21:50

    So I had my usual Sickle Cell check-up today at the adult clinic. After them sticking me twice in my arm, because they couldn’t find my vein, I patiently waited to meet with my doctor. When the doctor came in to consult with me, I eventually had to tell her I hadn’t been taking my Hydroxyurea for a total of 9 days. I went on to tell her the reason which is I could no longer tolerate the side effect. The side effects I was experiencing were as follows: exhaustion, weakness, nausea, diarrhea, dizziness, black stools….most of the things you’ve listed above. She asked me did that all go away after not taking the medicine and I told her yes so far so good. The symptoms were never addressed, besides for her saying that it might not have even been the medication, and she preceded to tell me how important it was for me to be on the medication and that I would die at 40 years of age if I didn’t take it and about 60 years with it. She even said that there will be no real cure and I will have to take Hydroxyurea for the rest of my life. I have always believed that a cure would be found in my lifetime and I still believe this holds true. I felt no real support and no real concern for the way I felt. She basically said take the medicine or spend life in the hospital and die early. However I don’t want to say hydrea is totally bad because it definitely helped me get through my first year of college with no hospital visits. I just couldn’t stand that horrible feeling or laziness and dizziness that I had no control over my last couple week on hydrea and throughout the years. I even told the doctor that this wasn’t forever. I only wanted a break from it for a couple months. I just don’t know what to do. I feel like I trapped and there is no escape. Either way I will have problems to deal with. Any suggestions to this problem? Please help.

  2. Sickle Cell Warrior
    Sickle Cell Warrior Author June 13, 12:59

    @Tahira, I never got on Hydroxyurea because of this issue. When researching the side effects, it pretty much scared me and I couldn’t take the pills. I take Nicosan, a natural remedy that has kept me crises free for 3 years and counting. Unfortunately it is very hard to come by, as the factory has stopped producing it. Hopefully things will change soon, and I can offer Nicosan yet again. You should do searches for L Arginine, Glutamine, Dioscovite and VK5000. All of these have shown success with sickle cell in some people, and maybe this will help tide you over until then.

  3. Soc Professor
    Soc Professor June 13, 21:22

    I have been on hydrea for the last three years and I have had no side effects. It has kept my blood count a little higher and the crisis a little less severe.

    I have also taken the natural stuff like L Arginine which was of no help at all.

    All medications have side effects but we have to remember that they often over list the effects but it is unikely that patients will experience all the symptoms listed.

    I am now 42 and experiencing daily pain and discomfort. Unfortunatrly things do not get better but deteriorate. Anything you can try to have a better quility of life should be seriously considered. There will come a time when the options window closes and nothing will give you relief

  4. Sickle Cell Warrior
    Sickle Cell Warrior Author June 14, 01:44

    @SocProf, Thank you for your response. I’m glad that Hydrea has worked for you. I know a few people that it has worked for, and I’m happy that it exists. But you still have daily pain?? So how is it working exactly?

    It is pushed constantly by the docs, so I know that thousands of people are on it or have taken it. However my point is that there is an ugly side to Hydroxyurea, that alot of people experience, but do not realize. And you cannot compare the side effects of GI symptoms, your hair falling out, or the possibility of developing cancer on Hydrea, on the same level of another drug side effect (Arginine ~insomnia, excess energy, diarrhea) ; (Nicosan~blushing). I’m not saying that if you are on Hydrea you will be plagued with every side effect on the long list, but many people do not even realize that it comes with a slew of side effects. And they list ALL the possible side effects, and the Hydrea list is longer than any other drug that I have ever heard of with sickle cell. Education before starting any medication/natural remedy is the key, and one must educate themselves before you take anything. Our people are not doing that, and this is where the problem lies.

    Since I’m only 29, I cannot attest to the fact that as you grow older with sickle cell things deteriorate. But I do feel that a lifetime of taking drugs, especially harsh ones like Hydroxyurea will take it’s toll on your body. This is why research is essential. And it is quite important to stress that lifestyle choices have a HUGE impact on your health. When I cut out fried foods from my diet, and increased my intake of fresh vegetables, I had less crises. With sickle cell, everything is connected and you can’t just do one thing as the only solution. In the same vein, doing one thing can have detrimental long term effects that most people are still unaware of.

    My reasons for not taking Hydrea are my own, and I’m really glad that it “works” for you. But I have found other things that work for me; and work excellently well. I haven’t had a crises in 3 years, and do not have any daily pain. I am able to exercise regularly, I feel stronger, healthier and more vibrant with each passing day. And I have no side effects, or need to have my blood levels checked every month. I’ve found a beautiful paradigm of existence with sickle cell, and it wasn’t through Hydroxyurea. That’s where I’m coming from.

    I really do appreciate the dialogue. Thanks!

  5. Renee
    Renee September 22, 18:30

    I have tried hydrea, it didn’t work for me. My hematologist took me off of it almost 30 days after taking it. I felt sick all the time on that drug. He then put me on L-Arginine to help open up my veins to prevent strokes and whatnot. I haven’t had a crisis in 5 years since being on the Arginine. The onlyl side-effect I get is nausea. I sympathize with Tahira because it sounds like her doctor thinks she’s God and can tell when Tahira will die. She also sound like she does’nt care about what Tahira is going through on the medication. Same on that doctor. I hope that she one day knows what it feels like to be a patient and take meds that doesn’t agree with her. How dare she! She has no business being a doctor. Medicine should be reserved for ppl who actually cares for others and want the best treatment for their patients. Tahira, girl find someone else.
    I was wondering if you guys ever considered that maybe different drugs would help certain types of Sickle Cell. According to Hope and Destiny there are 7 types of sickle cell. I have the S Beta Thalessemia 0 type and managed well with only taking folic acid up until my mid 30’s. Since my mid 30’s I still wasn’t getting alot of crisises but I have been getting more pneumonias and suffer from leg ulcers. I would love to find something that would raise my H/H, prevent the pneumonias (the vaccine was useless), and prevent the leg ulcers. I think I am going to try that Dioscovite and see how it works for me. Where do you think I can get it? Whole Food Market?

  6. Sickle Cell Warrior
    Sickle Cell Warrior Author October 11, 22:46

    @Renee~Amazing that Arginine has been so great for you! Dioscovite isn’t at Whole Foods but you can incorporate more natural foods with Thiocyanate into your diet. There is a list on the Nutrition section. Also, you can order Dioscovite either from TJ or from the website directly http://dioscovite.com

  7. Denise
    Denise November 27, 10:42

    I’ve been doing my research and I’m terrified of all the side effects. Also the ingredients in the drug puzzle me (like why is there titanium in it?). I got knots in my stomach reading about it all and then still giving it to my 6 year old everyday. When I spoke to her doctor about taking her off He said that I’m endangering her and that they would call Child Protective Services on me for not taking care of my daughter. I feel trapped. My daughter hasn’t experienced any of the side effects but she has had several severe nose bleeds being on this drug. I only want the best thing for my daughter and I don’t think this drug is it, especially when I’m reading about so many supplements and foods that can help her (like thyme, oregano, clove, rosewood, cinnamon, fish and soybean oil – these help for pain, increasing bone marrow, and as blood purifiers, blackseed oil – which boost the immune system and is also known as the “blessing seed” because it does everything, vitamin A, E (works with Selenium), C, K2 – which help the blood and spleen, Zinc (has been very effective taken with Copper) – helps cells not to sickle, Vanillin, and Alpha Linolenic Acid (this can be found in flaxseed), and Alpha Lipoic Acid – this helps the brain. You can look up the side effects and benefits on WebMD.com. I just have to make my decision on what I’m gonna do but I feel like anything being pushed so tough deserves a closer look and maybe even some speculation.

  8. Blessing inegbedion
    Blessing inegbedion February 26, 08:51

    Pls guy i want 2 b a member of dis family 2 enable me get news n happening on hw our illness cn b manage wthout putn our life on d line so pls direct me on wat 2 do 2 join sickle cell warrior my number is 08176322819 or my facebk acc blessing inegbedion

  9. Sharon
    Sharon July 12, 11:13

    I have sickle cell and I feel like my arm is being twisted to take this hydroxyurea! I feel it’s a experimental drug being pushed on all sickle cell patients. They collect the data and get a kick back and we die from the side effects! Why aren’t they paying us to test this drug for them! Because that’s what we are guinea pigs! I refuse to take it and I am tired of being bullied by my doctor! It is my right to refuse any med that I don’t feel comfortable taking! When we give in and possibly die from the side effects they just chart the experiment an how it failed on move on to the next poor soul that’s looking for a miracle! !!! There is no cure people! So lets live our life the way we choose without being bullied!!!! I’m not leaving this earth until my God says so. Not because I was being experimented on!

  10. Addaly
    Addaly October 29, 13:09

    i feel so stress, I don’t know what to do. I really need help. My daughter is going to be 3 in November she has sickle cell disease. Her doctor wants her to start taking Hydroxyurea. I dont really want her to because I’ve read that it was for cancer patients. she says that there are no side effects. And told me that it was the best. I feel that she is pressuring me. I dont really want my daughter to start this drug. I’m no sure what to do, or how to say that I’m not interested on that drug. I’ve heard about nicosan, I looked to see it they sell it but I cant find anything 🙁

  11. Sickle Cell Warrior
    Sickle Cell Warrior Author November 12, 16:15

    Try the Hydroxyurea. I’m on it right now and it hasnt been that bad.

  12. Bill J
    Bill J December 09, 08:19

    I am new to this site, but I see a lot of talk here about Hydroxyurea (hydrea) and a lot of the bad results everyone lists in common are things I can personally attest to as having afflicted me as well during my Hydrea Therapy.

    But.

    I have been on hydrea therapy consistently for almost a decade now, and I can say with certainty, that a decision made by my hemotologist was critical to managing the side-effects.

    This was her decision to pair the Hydrea with Morphine Sulfate.

    Prior to the pairing, my attempts at Hydrea therapy ranged from “laughable” to “utter failure”. Primarily due to the horrid side effects on my digestive system. Burning, pain, restlessness, more burning, more pain, etc. etc. If it had not been for the pairing of the medicine with Morphine, I would easily have declared Hydrea to be a sham, a pipe dream, or at its worst, a crime against people with Sickle Cell, perpetuated for profits.

    I am willing to be a full-defender of Hydrea at this stage of my life because I can take the medication, daily (haven’t missed many days in the last 9 years), without any noticable side-effects. All of the digestive system issues are mitigated by the habit of Morphine and other opiates to cause constipation. Because these two medications are taken together, I am able to realize the full effects of Hydrea Therapy.

    That is going from 1-2 emergency room visits *per week*, prior to therapy, to less than 1-2 *PER YEAR* within just a few years, to the point of now mathematically, I’ve had less than 1 visit to the hospital for Sickle Cell issues *PER YEAR* for the last 5 years. And when I do go, often it is for Priapisms (my only SC complication since 2007). And even then, Priapisms that were previously so bad I seriously considered “self-amputation” that were happening weekly, now were simply resolving on their own with an hour of stretching and exercise in the morning (gets the blood flowing, and has fixed more potential priapisms than “aspiration” has).

    I am reading more about this Nicosan medication, and if someone had presented me with this option a decade ago, I would’ve declared Nicosan as the ONLY option, because of the Hydrea side-effects. But instead, I really want to say give it a shot, but just tell your doctor that even though it’s just an example from one person on the internet, pairing Hydrea with opiates resulted in a significant improvement in side-effects for this man.

    This man who didn’t lose his hair, and still has mighty fine Corn-Rows to this day, finished college, works 40hrs a week making a very nice amount, and with someone who had to be told by me that I had sickle-cell because they couldn’t tell otherwise. (My Jaundice hasn’t been a thing in many many years, I’m actually gaining weight now, and I’ve been to the hospital more for broken bones than sickle cell issues over the past 5 years.)

    Please don’t avoid Hydrea because of fears, realize that every person will react differently, and that in my case, MS Contin, paired with Hydrea combined to completely turned my life around. I don’t have the ability to really state how tough it was adjusting to taking morphine daily (Jesus was it hard to stay awake in class…), but I cannot disparage the results, and the only thing I would change if I could go back in time, would be to tell my doctor 30 years ago that Morphine + Hydrea = Miracle.

    Please stay strong everyone. I know how bad it gets at the bottom of that hole of despair that sickle cell burdens us with. But there is a way out of the darkness for everyone to find. Keep fighting, keep reaching.

    Even when facing the darkest of nights, there will always be a dawn.

  13. Nodele
    Nodele April 01, 13:25

    So glad to have stumbled on this site. 1- Please is Hydrea availble in Nigeria 2- Some made mention of morphine, will this not lead to addiction. 3- Is there no trado solution (herbs) in Nigeria to attack this Sub African prevalent ailment.

  14. Sickle Cell Warrior
    Sickle Cell Warrior Author April 17, 21:08

    @Nodele, I’m hearing Hydrea is now becoming available at LUTH and IUI (Ibadan). The incidence of addiction in those with sickle cell disease is no higher than that in the normal population. If you have an addiction problem already, obviously don’t take it. But if you are taking it for pain, and it is prescribed, then it is warranted. There are several herbal remedies esp in Africa. Uganda just came out with one and they had Solamin and Nicosan from Nigeria.

  15. Taxco
    Taxco May 23, 05:06

    The only problem that I have now is leg ulcer and it has last for years now so please my fellow worries do any one has any solutions to that

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