Sikcell: People living with Sickle Cell
We still Hope
people with sickle cell on hydroxyurea what you think about it good or bad
Replies to This Discussion
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Permalink Reply by jerome crawford on
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I have just started hydroxyurea for one week, My last pain crisis was so bad , I could not move, It was in My legs and arms and back at level 10, My dad pick me up and we went to hospital for help. Thank you so mush for having a heart of God in you to share. Be Bless Jeromee
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Permalink Reply by dawn denise on
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Hydroxyurea has been shown to decrease both the intensity of pain and the frequency of pain episodes in more than half of the people who use it. it is said that it also decreases silent organ damage that we have and don't know about but that may shorten our lives. i have not taken it yet b/c i am not hospitalized that often although, as i have gotten older, i find that i need more daily pain medication and so am planning to ask my doctor if i can give it a go to see if it improves my quality of life. i currently work and am raising kids and would be happy not to be in pain as often as i am now. it doesn't hurt to try it out right?
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hi stephanie,
protein in the urine can be a big deal or not. i don't know what all tests they did but if the person who said that your kidneys are okay is not a nephrologist then i would ask for a referral to see one just to be sure.
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Permalink Reply by stephanie eccles on
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thanx dawn I appreciate the advice i will look more into it
i was wondering did ur pain issues increase after kids?
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hi stephanie,
i didn't have any pain while i was pregnant, at least not enough to take any medicine for it. i was EXHAUSTED all the time - i remember falling asleep while eating (literally). i was hospitalized during both my pregnancies (one child is adopted). with my eldest son (who is now 12 and I think is getting a mustache - EGADS!) i had acute chest syndrome and had to have an exchange transfusion but had no pain, just difficulty breathing. he was fine when he was born. with my second child i was vomiting/nauseated the entire pregnancy and had to go to the ER for fluids once or twice b/c of this but he was also fine when he was born. i am noticing more pain now with age but did not notice it with pregnancy. dunno if anyone else had a different experience though??
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thank you dawn, this is so helpful. one of the reasons i have been putting it off is because of the risk during pregnancy and how they increase. i was advised to wait until i go 2 yrs w/out difficult crisis' which proves to be rather difficult for me....
but this is a bit hopeful for when im a bit more ready, thank you, now i have a small pic of what could be some of my issues.
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:)
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i would love to comment to this offline one black mama to another.
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one thing i will say online stephanie - do you know if your husband carries sickle cell trait? if he does then there is a 50% chance that your child will have sickle cell disease and the rest will have sickle cell trait. he can go in and find out what kind of hemoglobin he has with a blood test.
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Thank you for your help, Its hard sometime to understand why me. But I know we all must stand and stand again in faith and in hope. I Know the God can do anything he choose to do. I just know that "HE" has " HIS" Saints in the earth. Be Bless Jerome
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hi jerome - i know that feeling. i am living and working in Africa right now and, i tell you, it puts a WHOLE new perspective on things. we are so incredibly Blessed to be black Americans. if we were born and lived in Africa we would surely be dead, we would surely have suffered a great, great deal more, we would surely not be living the lives we have now, we would surely not have a medical system (in spite of it's faults) that has made ALL of the important discoveries about sickle cell disease like ours has, we would surely not be having children, we would surely not GET TO HAVE hip replacements and safe blood transfusions and bone marrow transplants and on and on. GOD has been Gracious to us. do you ever ask the question, "why not me?" many have gone on to die yet we have been given one-more-day!! and when we get to heaven how much greater our joy will be! i hope i can fly:)
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hi j - sorry, i didn't see this message until now. i am glad that you are giving HU a try, it is worth it to improve your quality of life and to enable you to live more. it doesn't work for everyone but for most people it makes a HUGE difference in that they have less pain, less missed days of school/work, and less visits to the ER/hospital.
every medicine has risks and benefits (even the so-called 'natural' ones). so far, and it has been more than a decade, HU has been used safely by sickle cell patients for the most part. do you know that acute chest syndrome has a 50% death rate? do you know that people with sickle cell anemia who have frequent admissions to the hospital will likely die young? or have a stroke? or require frequent blood transfusions? all of these things carry a risk of death. when you compare the risks of HU to the risks of death/suffering/long-term disability associated with the disease itself then the side effects don't look so bad. and they are RARE. taking HU for a sickle cell patient who is frequently ill is safer than doing nothing at all.
go to your medicine cabinet and read the possible complications of whatever you have in there, you will be astonished! they HAVE to list any possible thing that can happen by law. we wouldn't take tylenol if we read all the of possible side-effects of it, but these side effects are rare and most of us take tylenol like we eat skittles.
have a great day friend!!! let us know what you think about the HU.
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