We still Hope
Hi Anita, Welcome! I have never heard of SS with fetal hemoglobin.
From the sound of it, you don't seem to be that bad of that you need the hydroxyurea...just my opinion. I have SS and i dont take hydoxy so i cant give you advice on that, but I would make it my last resort.
Hi, Hello, and Welcome...
I agree with Pam, Use that drug with caution and as a last resort!
I was on it for 11 months and it almost drove me crazy, no joke.... For me it was Okay one day and WIRED for the world the next. Sleeping 2 hours at a time and then full of energy and then for whatever reason I would feel like someone had just let all the air out of me with total exhaustion!
I had many side effects including black and dark blue marks all over my body like someone had just beaten me with a bat! Expect to have blood work done every two weeks as too much of this can indeed cause more problems. Based on what you have said.... your condition does not warrant this drug at this time.
YOU DECIDE but do your research first! I was placed on the drug after a total blood exchange to stop or help recover from clots that could result in a stroke or heart attack.
I am thankful for the great care I received but would pass without hesitation on the follow-up drug!
Not SORRY to say,... I flushed it all down the drain and got better and better.
Thanks so much for writing me back! I'd like to hear more about your situation. How young are you and Do you also have fetal hemoglobin? What has been your longest hospitalization? My longest ever was in 2003 when I had an acute chest syndrome and was in the hospital for about 3 weeks during which time I also had my gallbladder removed. But after 2003 I didn't have a crisis for 2 years! But now if I'm hospitalized it's 2-4 days, but like I said before that has been only 1-2 times per year. I see your point about just trying the hydroxy and I'm really leaning towards doing that just to see if it will help - especially with fall/winter coming up. If you want, please connect w/me on FB. Thanks for your feeback!!
im on fb about as much as I am here... difference is I allow the notification emails from this site... lol in other words its easier for me to connect via here
any way my longest stay recently has been about 2 weeks. a few years ago I think I was in the hospital for close to three most of which I was out of it due to pain and then to meds.
I am 35 yrs young hee hee and blessed to be here. God keeps me. I am on hyroxy for now cause my doc wants me on it, if you feel you want to try it you should, better sooner than later.