[blockquote style=”2″]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.[/blockquote]
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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.
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?
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.
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
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.
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.
I’m a 46 year old man with sickle cell disease. My entire life I was never hospitalized until my mid 30s and then I guess I got soft. I think in 2014 I went to ER 38 times. I was going through a divorce and for some reason my Fetal Hemoglobins are now rising every year. I’m now at 20%. I do not know why, but it contributes to me not suffering as much if I take MS Contin twice a day and I have been taking folic acid and Geratol for 15 years. Then my Doctor put me on Hydroxarea and guess what?! Both my legs started getting very numb only at bedtime while laying down. The more I took the more numb they got, so I stopped taking it and told my doctor I’m done. He said ok and that was 10 yes ago. He recently mentioned to me about starting me back on it and I said it makes my legs numb Doc, I’m not doing it. And he agreed. I’ve been to the ER once last year but was not admitted though in the last 5-6 years so I’m content this is something I wouldn’t wish on anyone.