Sikcell: People living with Sickle Cell

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SS with Fetal Hemoglobin

Hi all. I'm new to this site and was hoping to connect with anyone who may be in the same situation as I am and also just to be linked with a site that is focused just on us, our trials, challenges and successes. I just turned 50 in March & I still can't believe it! It's such a blessing. I have a loving partner of 10 years. We don't have any kids but do have a 10 lb mini Dachshund named Shelby. We have wonderful friends, neighbors, family members, & co-workers who are very supportive. I am the middle of 3. My brother has the trait & my sister also had the trait (sadly we lost her when my family was in a car accident on Christmas morning 10 yrs ago). I was diagnosed with SC at age 19 but it wasn't until I was around 40-41 that my hematologist ran a special type of blood test to see exactly what kind of SC I had. He said he was interested because I was living relatively healthy with the exception of 1-2 crises/year that might require a hospital stay or just an ER visit. He found out that I have SS w/fetal hemoglobin. This explained why I didn't get sick frequently.

I grew up in Baltimore, MD but rarely got sick in my 20s until I moved to OH in my early 30s &'that's when I started having crises during the coldest & hottest months. I also noticed that every month when I have my cycle that I feel real crappy but never have had a crisis because of it. But I've had long periods where I haven't had a crisis-the longest time was for 2 years. But I believe the climate of OH definitely contributes to how I feel. My current hematologist wants me to try hydroxyurea but I'm afraid of the side effects.

Is there anyone out there who has SS w/fetal hemoglobin who is currently taking Hu and managing well? Thanks for reading my story.

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Permalink Reply by Pam on June 30, 2014 at 1:35pm

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.

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Permalink Reply by Anita Bratcher on June 30, 2014 at 6:06pm

Hi Pam. Thanks for your comment. I'm still doing my research but my hematologist says that even if taking Hu decreases my crises by 1 per year that's still less time that I would have to spend in the hospital or ER. And I could always stop taking it if I didn't like it

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Permalink Reply by GL Wilbert on June 30, 2014 at 11:26pm

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.

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Permalink Reply by Anita Bratcher on July 2, 2014 at 7:01pm

GL. Wow! I'm sorry that was your experience. I never heard about the side effect of being wired and then feeling drained. But I have heard about the small chance of skin darkening. I hope that disappeared once you stopped taking it. Thanks for your comment. I hope you are doing well.

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Permalink Reply by stephanie eccles on July 24, 2014 at 3:47pm

Hi Anita,

So I think i am in a similar boat as you. I was not sick for a long time except for the occassional little episodes and now im in the hospital about twice a year and my stays are getting longer. I did not change locations so this is just something changing with age.

my doctor insisted i go on hydroxy so i have been on it for a month. i am just testing it out. she told me the amounts that we take for scd is no where in the high levels ppl take it for cancer so the symptoms will not be the same. i can not attest to seeing any side affects right now other than some unusal little white bumps on my fingers under the skin... so i will still be monitoring anything thats going on and if my blood work comes back and my numbers are falling shes gonna take me off of it... i hate taking pills and she knows it.

Any way the older you get, the worst it is for you to be in the hospital for extended stays. It might not hurt to test it for a month or two if it doesnt work then just stop taking it, but if it could prevent you from being hospitalized it would be better for you.

Hope that was in some way helpful.

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Permalink Reply by Anita Bratcher on July 25, 2014 at 2:17pm

Hi Stephanie!

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!!

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Permalink Reply by stephanie eccles on July 27, 2014 at 3:59pm

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.

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Permalink Reply by Anita Bratcher on September 17, 2014 at 12:33am

Hi Stephanie-thx for your reply. Ive been taking hydroxy since Aug1st & so far its been beneficial. My Hg levels went up & no side effects thank God. I'll continue monitoring for side effects. I feel pretty good but the real test will come this winter as I usually get sick in Mar-Apr

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Permalink Reply by Yoseph on December 30, 2014 at 12:45am

Did the doctor tell you whats the % of your Fetal hemoglobin?
As to hydroxyurea it helps by increasing your fetal hemoglobin and widening your veins. My child has sickle cell and high fetal hemoglobin and has been doing well except for his spleen and jaundice so the doctor decided to put him on HU and I was hesitant and kept delaying it untill I finally agreed to start him on it. So far it has been great with my son and absolutley no side effects, he is hospital and transfusion free for almost a year now (he is only 3) except for when he gets fever (due to an infection) then I have to take him to the hospital where they only monitor him and send us back home the second day.I thank god day and night for blessing us with the mild form of the disease

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Permalink Reply by Gr8Ful on January 5, 2015 at 6:27pm

Hello! My name is Rashidat and I am from NY. I was diagnosed during my first trimester pregnancy with my first child. I knew i had it (well i thought i had the trait, long story) , but was never hospitalized becsuse i rarely get crises and when I do, my pains very managable with pain killers, no hospitals required. I have SS with thalasemia Also my fetal hemoglobin was tested and I have about 7% in my blood, the reason I don't get sick all the time and my pain not intense.( I haven't had a crises in about 4 years, all I take is 800mcg folic acid and drink lots and of water). Unfortunately and fortunately, my child has SS but fetal hemoglobin is about 30% and they test every year. At 4+ ,I am told it won't change much which is a blessing because most people Ioose about 98% of their fetal hemoglobin by 6 months of age to 1. So I guess she will be like me and better. Nice to meet you all!!

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Permalink Reply by Maxine Taylor on January 5, 2015 at 10:39pm

Hello , my name is maxine and it is good to meet you. I am 60 year old and l didn't have any problems with sickle cell until I was in my twenties and pregnant with my first child. I have sickle disease ss with fetal hemoglobin of 22%. My hemoglobin count is 7.5 , it dropped down to 5. five yeas ago my doctor put me hydroxyurea and I did well on it. My co unts went up to 6.9 but last year ayr my hair started to fall out I had a big bald spot, so my doctor took meoff it .he said that's one of the side effect, so I am off it now and doing good. 6 0take care and I hope all is well.