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What is the most effective medicine/treatment you use or have used to date?
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13 Replies
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I have red blood cell exchange transfusions every 6 weeks that have helped me effectively manage my health.
Since starting them in 2019, I have had to adjust the frequency at which I receive them to make sure that I am as health as possible during the periods between my transfusions.
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@tito-oye We need more people of color to donate blood. My church is having a blood drive December 14. People signed up last Saturday. A mom of a son with SCD works with the American Red Cross and was coordinating the drive.
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Tito, I get red blood cell exchanges every 4 weeks currently since February 2022. The exchanges were started to prevent the expansion of a stroke.
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Usually, I need to transfusions the blood during my strong crisis because my blood become very low but the problem that I’m facing every time, my Ferritin storage become higher and higher like 1500 mg/l which make the doctor gives me medicine to control this level, do anyone face this issue before when exchange the blood?
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Hi @Kassem yes I had that issue when I was transfusing a lot. They gave me Desferol, an infusion pump, to where until the ferritin went down. Thankfully for me, I use Hydroxyurea and I no longer have to have transfusions that often.
Be well,
Ada
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I have been getting transfused more often lately. Unfortunately, here in the US Drs are not doing exchange transfusions unless it is absolutely necessary. My hematologist explained that too much blood is needed for an exchange. Yes, my ferritin levels have been running pretty high (800). So I have been prescribed Deferasirox twice daily. It has been working a bit.
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@viviane141 @enorris we’re having that same issue here in the UK. So many people with sickle cell would be better off if they had the transfusions, however, if there aren’t enough people giving blood, the treatment isn’t offered frequently. Hopefully things start to change.
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@viviane141 ~
I do agree that in the US there is not progressive treatment for SCD. I have experienced that. I actually go out of state to get exchanges. I do not have a hematologist in my state. Self advocacy goes a long way for getting more than adequate care. My Ferritin levels have had a continuous drop for months, so I’ve started a regimen of Iron. -
@viviane141 ~
I do agree that in the US there is not progressive treatment for SCD. I have experienced that. I actually go out of state to get exchanges. I do not have a hematologist in my state. Self advocacy goes a long way for getting more than adequate care. My Ferritin levels have had a continuous drop for months, so I’ve started a regimen of Iron. -
My daughter is on Aminopure supplements and she is doing quite well. I buy them from the USA, In addition, she takes Hydrea, Omega 3 and Folate.
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Good for you Mrs Norris.
I have inquired multiple times about being on a scheduled blood exchange, unfortunately my doctors won’t budge😩Do you mind me asking where you get your blood exchange? -
Our sons are on hydroxycarbamide (hydroxyurea in the US), folic acid and vitamin B Co. The introduction of hydroxycarbamide about 5 years ago have been effective and they have not been in hospital except for normal blood tests. The incidents of pain have reduced in frequency and are normally treated at home using paracetamol, ibuprofen and dihydrocodeine if needed. Recently, one had to be in hospital after over 4 years and a partial transfusion of red blood cells was used. Based on our sons experience using hydroxycarbamide, we always recommend it to other warriors and their families, and the results have been positive, even though some are reluctant because of the future side effects, which in men, can be prepared for.
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@ace123 hydroxycarbamide was a medication I used from very young too and it worked very well for me, I’m happy to hear that it works for your sons too and it is amazing that they are able to go such long periods of time without hospital admissions!
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@enorris That’s amazing!!! I hope it goes well! This reminds me that I need to sign up to give blood again.
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It’s Good to hear that @Ada, God bless you.
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