Nicosan Skeptics---I need your story!

I got a question from one of my readers that I couldn't answer. I used to be a skeptic and require facts, figures and statistics; but I think I'm too much of a Nicosan believer to be able to answer this.

My baby is also on NICOSAN. Can't dream of taking her off it!!!! My elder sister has an 8-yr old who has been on hydroxyurea for the last 6 years. She has had two major strokes affecting the right side and a minor one affecting the right shoulder. I have tried time and again to get her to allow her daughter take NICOSAN but she's refused. Unlike me who leans more to herbal she prefers {Westernized} real medicine which comes with statistical information on success rates, what the medicine actually targets in the body etc. Would you by any chance know of anyone who has had a similar experience and moved to NICOSAN with successful results? I really need to get her on this.

So to other users out there...how did you cross the great divide from Westernized 'real' medicine to herbal remedies and Nicosan? Drop me an email or share your comments.

Nicosan Tingles

The next few days, I'll be posting answers and questions that I've been getting from my darling readers about Nicosan and Sickle cell. I seem to be getting alot of similar questions, so I figure if I post them here, more people can learn from the same group of questions. If you have any advice, please feel free to leave a comment. We can all learn from each other.

Did the Nicosan seem to cause little tingles of pain for the first 2-3 weeks of taking it before things got better? Not huge pain, but tingles of minor pain...The pain has been similar for me--the first 2 weeks it was minor pain in my legs only which was sorta annoying, then the 3rd week (this week), it is only pain in my knees...The pain isn't crisis '10' pain but annoying enough to take a Motrin...It is about a '6' pain on the scale.

It passes after awhile, but I've learned to take the Nicosan at night so that I can go right to bed and not have to function all day and notice the slight pain....I'm glad to know that the Nicosan changes the shape of the red blood cells to normal. That is a blessing to know.

It does something to my breathing too, as if I can breathe a little better and relax...I noticed that from the very first day. It seems to be regulating everything I'm hoping. Overall I have not had any major '8-10' pain since being on Nicosan, and have cut back on my Motrin usage so I'm very happy about that!

I never had that effect, but one of the other users did mention this to me a while back. He has Sickle cell Thallasemia though, so I wasn't sure if it was something that more people went through or if it was specific to his disease process. He stated that he had minor pain in his hands, feet, and legs, but it was nothing like sickle cell pain, more like L1s (2-4). And that he kept taking it anyway, and after about 4 weeks, he didn't have any pain at all. We figured that it had something to do with the sickle cells that are already in your body. Since Nicosan configures the red blood cells from the sickle shape to normal cells, perhaps the 'sickle cells' in the smaller veins and capillaries need more time to get properly configured. Let me know if this persists after another couple of weeks.

Daily Pain Stops with Nicosan

I must say that I haven't had Nicosan in about three weeks and have noticed the difference. I didn't realize how much even the simplest pain was a part of my everyday life until Nicosan. I really hope they dont stop making this drug in my lifetime. It has really helped. ~JM

SCW: I was surprised at the effect myself. I stop taking it once in a while, just for about a week or so, to see if I still have pain (or if my some miracle, I'm cured!;). Sure enough, the pain comes back usually by the 5th day. Now I take it generally every day or every other day. I love not having daily pain!

PPH Sickle Cell Drug Trial Stopped

NIH stops trial of drug for sickle cell patients
July 28, 2009 | 10:46 am

The National Institutes of Health has halted a clinical trial using sildenafil to treat pulmonary hypertension in sickle cell patients after preliminary results showed that the drug was actually increasing sickle crises rather than reducing them.

Sildenafil, sold by Pfizer as Cialis for erectile dysfunction and as Revatio for treating pulmonary hypertension in otherwise healthy adults, relaxes blood vessels, helping to prevent blockages that induce painful sickle crises, which can resemble heart attacks. The new study, sponsored by the NIH's National Heart, Lung and Blood Institute, was designed to show that it would work in adults with sickle cell disease as well. About 30% of sickle cell patients suffer from pulmonary hypertension, a debilitating condition of high blood pressure in the arteries thatcarry blood to the lungs. It can lead to heart failure and death. Researchers tested the patients' ability to walk rapidly on a treadmill for six minutes -- hence the name Walk-PHaSST for the trial.

With nearly a year left to go on the trial, officials halted it when a preliminary study of 33 patients who had completed at least 16 weeks of treatment showed that they were significantly more likely to develop painful sickle crises during the test. About 38% of those receiving the drug had sickle crises, compared with 8% of those receiving a placebo. No deaths were observed.

Because the complications observed in the trial were specific to sickle cell patients, researchers said there is no risk to others using the drug for pulmonary hypertension. The agency recommended that physicians treating sickle cell patients off-label with the drug taper it off over a period of three to seven days to avoid problems associated with abrupt withdrawal.

-- Thomas H. Maugh II from Los Angeles Times

Tips for Flying with Sickle Cell

So to all my darling warriors that are fretting about their first long trip in a plane...here a a few tips to keep in mind.

Layovers: Do you have a layover? If not, make sure that you stretch your legs periodically to prevent leg cramps. When booking, I always recommend at least one layover for sickle cell warriors. Remember, high altitudes=less oxygen concentration=the possibility of a crises. So heading to the ground for even 20 minutes and getting some normal atmospheric air and pressure helps immensely.

Stretch: I usually walk 5-10 minutes for every hour of my flight, from one side of the plane to the other. This helps to reduce the possibility of getting clots or your legs cramping up. If it's a short flight (less than 2 hours), you might be okay, but anything longer than that...stretching is the key.

Accessibility: Have your pain meds easily accesibile in case you need them. It's very frustrating trying to direct a flight attendant where your pain meds are as you are writhing about in pain. Pack your pain meds in your purse or laptop. Have them with you at all times.

Hydrate: Hydrate, hydrate, hydrate. You can never have too much water. Skip the caffenated drinks and alcohol, both of them are known to dehydrate you.

Snacks: Some flights don't feed you at all, and it's always good to have something in your stomach before you take some pain medication. That way you won't have to fight nausea on top of everything else.

Oxygen: Make sure that your airline has onboard oxygen, they usually do for emergencies, but sometimes, esp if it's a long flight, it's nice to know ahead of time if they have it.

Read my tale of flying here. I must say I learned my lesson after that.

Shutting it Down

I know that I shouldn't let a few empty barrels ruin the party, but some of the people that are ordering Nicosan are driving me bonkers. All I wanted was to help people, not get harassed on the regular, get scammed, or get my Paypal account in the negative because someone chose to reverse their transaction. I'm seriously considering leaving the Nicosan trafficking to those that are more experienced and business savvy. I can't deal with this stress...it's really not worth it.

I found something that has changed my life, and I wanted to share it with everyone that was suffering from the same affliction that I was. I thought that spreading the good news would help other people have pain free and crises free lives.

Instead I find myself embroiled in drama and bullshit that I have neither the patience or time to deal with. This is not my business. I'M NOT MAKING MONEY FROM THIS! It's sapping too much of my energy to deal with bandying constant insults from virtual strangers. I've gotten to the phase where I want to shut the whole operation down.

Norio is telling me not to be hasty, that I'm helping people, even if I can't see the wood through the trees. But I really don't think I can take anymore of this drama. It's not worth it. I'm willing to pass the baton on.

Speak Up!

A friend on the Ning Sickle Cell forum is working with doctors at Johns Hopkins to develop training for medical students on sickle cell treatment & care. They want to know what issues we're having with health care treatment.

This is our chance to get on the soapbox and let our voices be heard. So please either respond via comments or send me an email answering the following questions:

(1) What issues are you having with self-management at home?
(2) With health care providers? (doctors, nurses, clinics)?
(3) With pain medication (or lack of proper medication)?
(4) Anything else that pisses you off about healthcare treatment of people with SCD.

Doctor's are listening and now it's your chance to tell them your thoughts.

Let's do it!

Information about Nicosan

Informational Release from Xechem Nigeria. This is old, but I just came across it so I figured it would help some answer all their questions.

NICOSAN™ is a non-toxic, Phyto-pharmaceutical, product for the treatment of Sickle Cell Disease (SCD). NicosanTM is obtained from the mixture of four Nigerian plant materials e.g. Piper guineese (Seeds), Pterocarpus Osun (Stems), Eugenia caryophyllum (Fruits), Sorghum bi-color (Leaves), in a standard ratio which produce a hygroscopic, reddish-brown powder with a pungent odor.

In July, 2002, Xechem acquired exclusive worldwide license from the Ministry of Health, Federal Government of Nigeria to develop and market NICOSAN™ (HEMOXIN™ in the US).

NICOSAN™ (HEMOXIN™) was shown to be a safe and efficacious medicine for the management of patients with Sickle Cell Disease. As published in the May 2003 issue of the British Journal of Hematology, Dr.Toshio Asakura and colleagues from Children's Hospital of Philadelphia (CHOP), USA and the University of Pennsylvania demonstrated the anti-sickling effects of NICOSAN™ (HEMOXIN™) in transgenic mice.

The quality and standardization of the medicine has been tested and proved by High Performance Liquid Chromatography (HPLC) and bioassay.

NICOSAN™ Characteristics
A 100 % Nigerian indigenous Product.
Product available in Capsules, pleasant tasting with no known side effects.
Dose determined and Clinical Trials conducted.
The pricing strategy will favor the poor and underprivileged.

BENEFITS OF NICOSAN™
1. It is used for prophylactic management of sickle cell disease (SCD).
2. It has potent anti sickling effect on sickled erythrocytes, obtained from patients with SCD and on transgenic mice that produced human sickle hemoglobin, thus useful in preventing painful crisis experienced by SCD patients.
3. It reduces hypoxic stress experienced by SCD patients (due to trapping of sickle cell in lungs), drastically.
4. It removes the incidence of blood transfusion in SCD PATIENTS.
5. It prevents clinical sequel (i.e. painful crisis).
6. It prevents ocular damage

PRESENTATION
NicosanTM comes in two different strengths:
250mg (Children Dose)
350mg (Adults Dose)

It is presented as 30 capsules, packaged in 60ml, HDPE bottles

DOSAGE
Adult Dose:
One (1) capsule (350mg) daily at meal time with water.
Child Dose:
One (1) capsule (250mg) daily at meal time with water.

SIDE EFFECTS
Rare:
Mild non- itching muscular rash
Nausea if taken on an empty stomach
Mild headache.

TOXICITY
- Non Toxic
- Higher doses of 2000mg 5000mg/kg LD50 (A lethal Dose at which 50% of the population of experimental mice were expected to die), there was no death recorded.
- No kidney or liver damage was observed both in human volunteers and in experimental animals during and after the clinical trials, the drug is safe in humans at the
recommended dose.

CONTRAINDICATION
There is no known contra-indication in both mice and human to all the active ingredients. The potash used for extraction and the binding agent (Lactose) are safe for human consumption.

No health hazard was observed, when administered in the proper dosage form.

INTERACTION
It can be safely combined, with other drugs, even the cytotoxic drugs like Indinavir, Zidovudine, Lamivudine and Vevirapine used in the management of HIV/AIDS.

Paracetamol (Tylenol) was found to increase the invivo concentration of NicosanTM care must be taken, when they are co administered.

TERATOGENECITY
There is no known teratogenic effect produced by NicosanTM, even some pregnant women who opted (against clinician's advice) to continue taking NicosanTM had normal babies.

STORAGE CONDITION
To be stored in a dry clean place storage temperature is 25oc. Protect from moisture and humidity.

CONCLUSION
NICOSAN is an effective and safe drug of choice for the management of sickle cell disease (SCD).

WARNING
Keep out of reach of the children don't exceed the stated dose.

Let me know if you have any questions.

Telling Your Job You Have Sickle Cell

Okay, for starters I've learned the hard way that it's always good to tell your job that you have sickle cell BEFORE you end up in the hospital for a week.

I used to work as a personal assistant, and it was a great job that used my organizational capabilities to the max! I fell sick 2 months into the job, and was in the hospital for a little over a week, and at home the rest of the 2nd week recuperating. Needless to say, when I got back, there was a ton of work to catch up on and my boss was not pleased. She wasn't mean about it, but she stated quite truthfully that if she had known that I would disappear all of a sudden she would never have hired me, or would have hired an assistant to fill in when I was out. I learned a great lesson that day, and ever since then, I've been upfront and honest to my employers and potential employers about sickle cell.

Usually, I don't say anything until the end of the 2nd interview (the one with your direct boss), when the interviewer asks me if I have any questions. Then I state, "Just so you know, I have sickle cell anemia. It's a hereditary condition that flares up once in a while. It makes me have to use my sick days a few times a year and sometimes, when it gets real bad I have to go to the hospital."

That's it. Nice, simple and honest. This usually opens up the ground for them to ask more questions, like what exactly is sickle cell anemia, and when was the last time I was sick. I usually only tell my direct supervisor about the sickle cell, but post-crises, I tell anyone else that asks. I'm not asking for sympathy...I'm trying to spread the word and shake the ignorance and mystique that surrounds sickle cell.

Now I work in the medical field, so people 'get it' more. However, this same speech has been used to interview for an office job, a mall job and a writing gig...so it can be tailored to fit your profession as well. I've never NOT gotten hired because I told them I have sickle cell (knock on wood).

I understand the mentality of trying to hide that you have moments of vulnerability from your potential employers. But sometimes hiding the condition ends up doing more harm than good. Employers love it when they get the full idea of the person they are hiring (so states my HR sister Ms. Diva). And when they do find out later, they might end up resenting you for hiding it, and since they legally can't fire you for being sick, they make your job more and more difficult so you eventually have to quit or get sacked for something totally retarded.

Remember, if you had diabetes, lupus or MS, it would not be a huge deal to tell your boss that this is my condition, and these are my limitations. So apply that same principle to your job now. Honesty is the best policy.

The Crazy Things I Say with Narcotics

On the Sickle cell Ning forum, there is a great discussion about the crazy things that Sickle Cell Warriors say while they are on narcotics. Personally that hasn't happened to me in a while, but I do remember the days of horrendous hallucinations and crazy conversations. Whoever was at my bedside at the moment bore the brunt of it, and to my sisters, this was just perfect teasing material for later. I rarely remember what I said or when I said it, I'm so far either in pain or out of it, but my sisters still crack jokes on me till this day.

If not for the fact that my family treated it so lightheartedly, I don't think I would have been able to cope with spewing out secrets, random thoughts and whatever popped into my head while under the influence. I'm sure that some have had to go through periods of shame, embarrassment or insecurity due to this. But you know what? It's okay!

I've said some crazy things on drugs. My man states that he loves grilling me when I'm looped up because then 'I really get to know what you feel about issues!' Yep, he does take advantage of my no-filter mode...and since I don't imbibe alcohol, that's pretty much the only time you will get me with my guards down.

The most outrageous thing that I said *(which I didn't remember and deny to this day!), was that I was a hired assassin and killed people with my violin case a la Antonio Banderas in Desperado...lol. I also said I was the Princess of Egypt, and named my seven older brothers in order...threatening that my older brothers were warriors and would come beat up the nurses for causing me pain. (As you can see, I tend to have quite violent hallucinations!)...

Although I do get slightly embarrassed when I'm teased about all the crazy stuff I've said, I just roll with it...it's all part of the experience I guess. I mean, if I let it get to me, then I would become a neurotic mess each time I was faced with the thought of having to take painkillers.

Just roll with it. Let it go. It's not a big deal and comes with the territory. Or else, slap some duct tape on your mouth right after you take pain meds. ;)