Taking Nicosan and Hydroxyurea

I got a question today that I couldn't answer.

Has anyone taken Nicosan WITH Hydroxyurea?

Did you notice a difference?

Have you had any side effects?

Please share your story, either via comments or through my email.

Thanks!

Hydroxyurea...for those who like it...

I got this from one of my readers and decided to share this with everyone. It was on the comnparison of Nicosan versus Hydroxyurea post. I know that this blog might have become a one note wonder because Nicosan has worked miracles for me...I mean, it's almost 10 months and counting with no pain, crises or negative side effects.

Being that I've never been on Hydrea, I'm not the one to give you an unbiased opinion. So anyway, for those of you that are on the Hydroxyurea band wagon....this one's for you from J.

I was reading your Hydroxyurea/Nicosan comparison, and thought I needed to write you. I am 35 yrs old and have SS. I would say I’ve been on Hydroxyurea for at least ten years if not more. My liver and kidney are frequently checked and are in great shape. When I first began taking Hydrox. in my mid-twenties, it raised my hemoglobin levels from about 6 to 8. It hovered in 7.5-8 from that time until about three years ago. For a while it stayed in the mid 6 range, but the past year it stays at 5.2.

Over the past ten years I’ve been on Hydrox., I typically have been hospitalized once every 2-3 years. This is a massive difference over previous years before Hydrox. where I was admitted a couple times a year in my early adulthood. My number of crisis most certainly drastically reduced the first 8 years while on it, though the past couple have been a struggle.

In regards to side affects from Hydroxyurea, I’ve had: zero hair loss, zero loss of appetite, zero drowsiness, zero nausea, zero vomiting, zero diarrhea, zero constipation, zero stomatitis, or zero anorexia. If we read the possible side affects of every pharmaceutical we take, every single one is going to have a list of scary ‘possible’ side affects. We just have to weigh it out.

So I just wanted to write and let you know Hydroxyurea is a medication that has been of great benefit to me with little or no side affects. The past year or two, it has not been of as great of help to me as previous years; this is mostly due to my age, the severity which SC affects me and the damage done to my body from Sickle Cell. I personally would encourage every person with Sickle Cell--with the approval of your doctor of course—to give Hydroxyurea a try. If it doesn’t work, you can always stop.

Hydroxyurea vs Nicosan

Jay sent me a question that I think some other people might have. So we are going to do a comparative analysis on the two medications

My doctor recently put me on Hydroxyurea. I was hesitant taking it because of the long term side effect of leukemia, but in the end I took it. I've been on it since May, and since May I still was getting sick and in the hospital. Then my doctor increased my dosage. My boss is from Nigeria and told me about Nicosan, Ive never heard of it before, so I started to read about it and that's how I found you. What do you think about Nicosan and Hydroxyurea?

First of all Jay, let me correct your misconception. Hydroxyurea (or Hydrea) was used primarily for the treatment of myeloproliferative (cellular abnormality) diseases like leukemia. The problem is that this treatment might trigger another rapid cell growth (which is a cancer pre-cursor).

Personally I would never take Hydroxyurea, although several people have told me that it works for them. Nicosan is my drug of choice and it's been treating me very, very well. I'm going to break the pros and cons of both of them down just so you get a better picture.

Hydroxyurea

1. Adjunct chemotherapy drug (don't know about you, but I'm anti-cancer anything!)
   
2. Method of action: increases production of fetal hemoglobin cells by increasing nitric oxide levels (so pretty much, you can just take a soluble form of nitric oxide and cut out the hydrea altogether. Look up L-Arginine)
   
3. Very toxic to the liver and kidneys. Causes bone marrow suppression
4. Needs regular blood monitoring to check your platelet, BUN, liver enzymes and CBC levels
   
5. Long term use hasn't been fully studied..who knows what will happen for those that have been on it for 10 years?
6. It is shown to reduce your rate of crises by 30% after you've been on it for 6-12 months.
7. Causes fertility problems in men and crosses the placental barrier in women, so you MUST not get pregnant or nurse while on it or you will have a jacked up baby
   
8. The side effects are atrocious and range from hair loss, loss of appetite, drowsiness, nausea, vomiting, diarrhea, constipation, stomatitis, mucositis, anorexia....the list is practically endless. I've never talked to anyone that hasn't exhibited at least one side effect.
   
9. Has FDA approval although the pharmaceutical company keeps announcing that "the benefits outweigh the risks". (*rolleyes*)
   
10. #9 means that your insurance will pay for it and all you have is the $5-20 copay. If you don't have insurance, it ranges from $80-$200 depending on your dosage.
    

Nicosan

1. Natural and herbal. A combination of 3 herbs: Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves.
2. Method of action: initiates an anti-sickling effect. The cells you do have won't assume their sickle shape. This means no crises---yay!
3. Naturally processed through the body. Doesn't damage your organs in any way.
4. No extra blood monitoring needed besides your usual H&H levels
5. Long term use hasn't been studied---but all these herbs have been used in African countries for thousands of years.
   
6. Reduces the rate of crises by 80% after you've been on it for 30-90 days.
7. Only side effect is flushing (blushing) due to increased blood circulation. Most people (like me) don't even exhibit this.
8. Has orphan drug status in the US although it's fully approved in Nigeria. The only thing holding up FDA approval is the big pharmaceutical companies that want a cut of the pie. Since they don't own the patent, they can't charge you outrageously for it. The company that makes Hydroxyurea would loss their advantage in the field. They would rather us all suffer while they block the drug from being approved and keep lining their pockets.
   
9. #6 means you will have to buy it out of pocket and order it from Nigeria until the FDA lets it be sold in the US under the phytochemical name of Hemoxin.
10. If you are paying out of pocket and shipping from abroad, it's pricier than Hydrea but this stuff actually works! 1 bottle of 30 pills costs around $60.00 and this includes shipping.
    

So....which do you think I picked? I'm on Nicosan, and it works for me.

For more information, read the tabs of the two drugs in the sidebar under File Cabinet. Good luck with your decision. Stay strong, stay positive and stay blessed!

Pregnancy & Contraceptives with Sickle Cell

Besides abstinence, what are the best contraceptive choices for a sickle cell warrior? For men of course that would be the condom, but for the ladies, with all the choices out there it gets a bit more complicated. You don't want to try anything that is too heavily based on hormones, because they have a risk of causing blood clots...and that is not something that someone with SCD should be messing with. So that gives a wary eye to most oral contraceptives.

I've used the Nuvaring and Patch for a while, but they stressed me out hardcore. Those PMS-ey symptoms on a regular basis are not my cup of tea. A low dose hormonal would be recommended but be sure that you assess for side effects, as everyone reacts differently to the meds. If you are planning on not having kids for a while the Intrauterine Device aka the IUD is also recommended, mainly because it has no hormones at all.

This is one of those things is based on your choice, but it's essential to talk with your docs about your concerns before you leap into one. Remember, the people at Planned Parenthood rarely come across questions related to sickle cell, so they might not be your most informed source. When all else fails, fall back on condoms, they suck but they work about 99% of the time when used correctly.

Please don't think that because you have sickle cell you don't need to be on contraceptives, that is just foolhardy. There is no way that I would wish what I have on anyone, and that includes my offspring, so I'd rather not have kids then to pass this ish on. It's better to make good decisions and choose when you get pregnant and with whom, that way you can research the HgB gene of your potential baby daddy.

Pregnancy is hard, you are high risk, but it's doable. If you want a child, just make sure that your baby daddy is prescreened for the HgbS gene because you don't want to pass sickle cell on. Amp up on your folic acid. Most people with SS report that when they are pregnant they don't have any crises and very little pain, however that is not the same for everyone. If you do have pain, you have to make sure that whatever meds you take don't cross the placental barrier or your baby would be addicted to narcs (not a cool thing btw). A good doctor will help you through the transition, and make sure that you are in a genetic counseling program as well as a high risk pregnancy group.

Hmmm, what else? If you are on Hydroxyurea, DON'T GET PREGNANT. That's a warning that is to be shouted from the rooftops. Hydrea does cross the placental barrier and your child could be affected even in the early developmental phases. Effected as in all kinds of documented as well as undocumented problems including mental and physical deficits. I know you what your little offspring to be perfect, so make sure that you double up on birth control or abstain from sex altogether if you are on Hydrea. If you do want to get pregnant, you have to get off Hydrea for several months BEFORE you try to sperminate. It has to be out of your system BEFORE you get pregnant. I cannot stress this enough.

All in all the big question is that can people with sickle cell have children? The answer, a solid loud resounding YES. You can have children, you can go through labor, delivery and childbirth, you can produce a beautiful bundle of joy. But you have to be more educated, more prepared and have more support than any run of the mill Nancy. I know a woman with sickle cell that has 6 children, and none of them have the disease. That's the kind of success story you want so be smart and line your ducks in a row before you take the plunge.

Good luck.

Hydroxyurea & Infertility

Now my doctors are trying to get my on Hydroxyurea like hardcore. I'm still scared about it. I know some people have used it with lots of great results, but those side effects are no joke---AND NOT BEING ABLE TO HAVE CHILDREN?? That is some crazy shit.

Well, the main thing is that if you conceive while on Hydroxyurea, your child will have birth defects. I'm not even sure I want children in the future, but not having that option because of sickle cell is something I'm not willing to take.

So there goes another reason why I won't take Hydroxyurea. I'm hoping that taking a mix of Fagara, Nicosan and Arginine will be the right combo for me. My mom is gonna get me the fagara root and I still have to figure out where I'm going to get Nicosan from, maybe I'll pick it up when I go to Nigeria this summer.

Hope you are having a great weekend...I'm going to work 3 nights in a row and then have 6 days off...wish me luck!

Why I Don't Take Hydroxyurea

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.

Sickle Cell Medication & Drugs

I hate taking pills. I absolutely detest them. I can take them one by one, swallow them whole, but nothing gives me an enjoyment in the process. Taking pills just reminds me that I'm sick. When I'm being honest, I must say that I really don't take meds unless I'm in pain.

When it comes to pain, that is one thing I find very hard to deal with. I"m all for non-pharmacological modes of treating sickle cell, but when I'm in the middle of an L3 or greater, pass me the drugs baby.

So, in no real order, here are all the drugs I've taken in the last decade or so.

• Folic Acid: This is a vitamin that I've been taking since I started my period. It's for the increased production of red blood cells and hemoglobin and should be taken daily. Now do I take it daily? Ummm, no. Of all the pills, this is by far the easiest to take--small, yellow with no aftertaste.
  
• Motrin: It's a larger pill---my dose is now up to 800mg per pill. It's a non steroid anti inflammatory drug (NSAID) which means that it helps reducing pain caused by swelling but has no steroids. Motrin kicks ass for L2s and used in conjunction with an opioid manages to wreck havoc on an L3 as well.
  
• Vicodin/Lortab/Norco: Same family, different doses. All three are composites of a Hydrocodone/Tylenol mix, and the strength depends on the dosage. The more codeine in it, the stronger the effect. I take these only for L3s. Apparently they are easy to get addicted to.
  
• Demerol: Holy mother! Who created this shizz? Demorol is absolutely insane, total poison that totally works. It blocks the pain receptors so completely that you don't even know that you are having pain. It gives an euphoric high. For me, it makes me delirious and giddily happy, some weird concoction. It's so strong that the FDA banned it for long term pain management, because it has been known to crystallize and cause granulation of the vein. In normal speak, it turns into crystal glass and the residue stays in the your veins and makes them hard as rock. That in itself has alot of complications so most docs want to stay away from Demerol for sickle cell peeps. I used to get Demerol back in the late 90s and I still have a wonky vein that's hard in my right hand. You have to have a doc that is trained in the old school to get this prescribed nowadays. It comes with a slew of side effects, nausea, vomiting, delirium, itching, you name it.
  
• Dilaudid: This is the master of all pain drugs. Dilaudid is from the morphine family and is available in pill form as well as IV. It's not mixed with anything else, and really does work for me. I usually take 4mg. The only drawback is that I get serious side effects of anything from the Morphine family (itching!) It gets so bad that I want to scratch my skin off. So the counterbalance of the itching is~
• Benadryl: This stops the itching but has a side effect of knocking me the fuck out. I'm woozy, I'm delirious, I'm talking out of my head and spouting all kinds of nonsense. This helps though, because by the time I wake up, an L4 would have dropped to an L3 and hopefully I don't have to go to the hospital.
  

Okay, there are more out there, but these are the ones that I personally take. I will get on the soap box about Hydroxyurea but that is for a whole 'nother chapter.