Here is a question that I got from a reader on Nicosan that I would like to address:
A friend of mine just started on Nicosan 12/12/08, due to lapse in medical coverage and not having monthly blood exchanges, he has been having severe pain every week, resulting in 2-3 ER visits/month since 9/08. Since taking it, the severity and frequency has been reduced, but not as much as we had hoped, and the other day had unexpected major crisis that landed him in ER for 3 days!! 1st time in 2 months. It has worked some,but this was disheartening to both of us, and I know most people are new to Nicosan, but if anyone could post about their experiences, is it working, a lot, a little, not at all? Just so we have something to compare it to? Thanks and I wish all of you “takers” well!!
I will leave this up for everyone to respond to.
This seems to be a trend that I’ve noticed from emails from other users of Nicosan. I had a friend that started taking Nicosan in December as well, but still had a major crises a few weeks later. He dropped out of it and went back to Hydrea. I felt bad when this happened, but each person has to find the best combination of meds and treatment plan that works for them.
I would love to hear the story of anyone that has been on this medication, even if it was only for a few short weeks.
Personally, (and you can read this in my archives), I started taking Nicosan late April, right before I went on vacation to Hawaii. I took it all vacation long, came home in May, started a new job and fell sick a few days later (Stress, strep throat, pneumonia). I was intubated on the ventilator—so yeah, it was a hard crises. I almost lost my faith in Nicosan right then and there, thinking it was a waste of time and money–or another drug peddled as a ‘cure’.
Norio pushed me to continue with it, telling me that Nicosan wasn’t to blame for my crises. “The manufacturer states that you should take it continuously for 30-90 days before expecting it to work right? So keep taking it regulary until then!” He theorized that my body was worn down prior to that, and the trip to Hawaii, stress of dealing with family, vacation, school and the new job had all contributed to me wearing down my body. “Now you are starting with a clean slate, your blood levels are perfect, and you will take better care of yourself, and you’ll give the drug a chance to work right.”
His adamant belief (and constant nagging), made me continue on taking the medication. I marked the days off on my calendar religiously, deciding to write days that I had pain, to days that I had no pain at all. Three weeks later, I realized that I hadn’t had pain since I was in the hospital. I thought it was maybe because I had a new transfusion, my lytes were good etc. so I waited for the 3 month mark, when my next crises would normally hit before I believed.
3 months later…still no crises. Best of all, no daily pain. But I’ve had stretches of 4-5 months with no crises, so maybe it’s just a fluke.
I hit the 6 month mark before I became a full believer in Nicosan. And I haven’t even taken it regularly (I hate pills!). I would say I take it about 3-4 times a week…yet I haven’t been hospitalized once since that last crises in May. I haven’t even been to the ER!
So now, we are at the 9 month mark…and counting. My pain pills lie unused in my cabinet, I haven’t filled a prescription since last year—I haven’t even visited my doctor.
On May 8th, 2009, it will be one year since my last crises.