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!

Message

So September is Sickle Cell Awareness Month...I'm sure many of you already know.

I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.

In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.

Please send some good vibes my way. I seriously need it.

Nicosan and Lab Levels

Questions: How long does Nicosan take to boost the HB level? Do you have a patients record or blood test results where I can actual see the improvements?

Answer: It took me about 3 months before my Hgb got a boost, but even then, I just went from my normal baseline of 8.5 to 10.6. I've been hanging in the 10s ever since. I don't have any clinical documentation on this but this is just my personal experience. Nicosan has no claims of improving the blood levels, it just helps to reduce the sickling of the cells by introducing more oxygen into the red blood cells and helping them to retain their round shape. Less sickling means less cells are dying every 10 days, which means less jaundice, and slightly less anemia.

Nicosan doesn't function to increase your HgB levels. The primary function of Nicosan, is to introduce oxygen into the sickle cells allowing them to retain the normal round red blood cell shape. The anemia is a by product of having sickle cells that die every 10 days versus healthy cells that live for 90-120 days. The overall value of Nicosan is that since the red blood cells aren't the sickle shape anymore, they aren't clumping together, hence less pain and less crises. I didn't notice an increase in my HgB values at all...and now, I'm still technically 'anemic' 10.8 at the highest; but don't have any pain, and don't have any crises. Nicosan does not work to reduce the anemia...it works on stopping crises and pain.

Getting Lab Work with No Insurance

Question: How can I order lab tests if I don't have insurance?

In regards to initiating your own blood tests, you can walk into a pre-employment or non-emergent clinic, and pay the doctor to order it for you. You have to pay for the labs themselves, and the doctor visits, it will come to around $200-$300 for both I believe.

Try http://www.questdiagnostics.com/...there should be one around you somewhere. Or any clinic that does pre-employment screenings, immunizations and drug tests. They are generally not as busy as 'regular' medical clinics and they have an in house physician, PA or NP that can order the labs for you. Then you take the slip to the laboratory and have it drawn, and you will have your results either called in or mailed to you. You have to pay for everything up front though...and depending on what you order, it can get pretty pricey. I've done this only once...it was $75 to see the doc and the labs I wanted were $135. Ask about the prices before you commit and make an appointment before you go so you aren't waiting for too long.

Great question!

Nicosan and Tylenol

I ordered some for my fiancé and noticed it says u have to be careful when taking it with Tylenol. Which is in about every pain med used except a couple. What problems can you have using Tylenol and Nicosan together do u know? I know you aren't a doctor but if you know anything about it I'd appreciate it.

The only thing that I've found regarding Tylenol and Nicosan is that Tylenol increases the concentration of Nicosan 'en vivo'. This means that Tylenol increases or enhances the Nicosan effect. If she is still on Tylenol all the time with Nicosan, then I would recommend switching to the Children's dose (240mg) instead of the adult 350mg dose. Personally once Nicosan starts working for her, I think her Tylenol intake would decrease rapidly. When I first started, I didn't know about this interaction, and I still took a lot of Vicodin/Tylenol and Norco. Now I still take Tylenol once in a while when I get period cramps or a headache, but haven't noticed any changes in my labs or my physiological response. I don't think it will hurt once in a while. But if after being on Nicosan for several weeks, she's still chronically using the Tylenol products, then definitely have to switch to the Children's dose.

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.