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.
3 comments:
In my twenties, I experienced the same positive results by simply cutting out pork and beef and eating more veggies and fruits. I literally went from having at least 2 stays in the hospital a year to once every 3-4 years! Now that I am in my 40's I am having more problems because of other (unrelated) complications that stress the SCD and am taking Hydrea to see if it makes a difference. Thus far, no problems and it's been almost a year.
I plan to try nicosan soon because I would rather not have any side effects to worry about, so keep us up to date on your progress. I'm using you as my lab rat!! LOL
Your diet can be a very important part of pain and crisis reduction. So eat healthily and live well!
I would like to know how we are defining "hospitalization" here. Is it the occasional trip that we go through that lasts about 4 hours and we are out or is it the major visit that necessitates a blood transfusion and a prolonged stay?
If we are referring to the latter then after Hydrea I would say that my case is similar to the writer's. I really didn't get seriously ill much and I can even recall when my blood count got to a ten. Now a days though things are changing. I remember when my blood count got to a 2 (yes, that is near death). I think it is fair that I explain that I no longer live in the states. I live in the Middle East. This has also proven to improve my health as the air is dryer here. Let me also advise my fellow sicklers to try black seed. This worked great for me when I ran out of Hydrea.
Haven't been hospitalized since I started taking it. But I did gain a little weight.
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