As far as I know there is no cure for SCD. The Haematologists in the UK, try to manage the painful episodes with strong opioids e.g. OxyContin, morphine, Tramadol etc. They also try to keep you well hydrated with bags of saline and also increase your haemoglobin numbers by blood transfusions. My GP found a good Haemotology Department in St George's Tooting, that actually have a dedicated team lead by the consultant, Dr Rhodes. I have 6 weekly blood exchange procedures, where several pints of my blood is replaced with several pints of sickle cell free blood. This has really helped me in the last few years although I still have some painful episodes but not severe enough for me to be admitted into hospital. My iron levels are monitored regularly and I do have to take Exjade to prevent iron overload in my organs. My heart, kidneys and eyes are also checked regularly and I take my yearly flu and pneumococcal injections. I also take folic acid and penicillin daily. Sometime ago I did try hydroxyurea but I had a lot of side effects so I did not continue. Some patients have benefited from the drug. I try to keep up with the latest developments in SCD studies and apparently a patient recently had a bone marrow exchange with his brother who is SCD free and that seems to have allieviated most of his SCD symptoms. It appears that bone marrow exchanges and gene therapies studies are being conducted on children in USA. I also read last week that a new drug called Endari made by Emmaus, has been approved by the FDA for patients in the USA. Apparently this drug makes the sickle cells less sticky so it flows freely through the blood vessels. I am not sure when or if this will be available in the UK. Finally it is important to keep warm eat well, keep well hydrated and try and get plenty of rest.
SCD treatments. : As far as I know... - Living with Sickl...
SCD treatments.
- Iron
- Tramadol
- Morphine
- Haemoglobin
- Blood Transfusion
- Hydroxycarbamide
- Saline
- Vitamin B9
- Oxycontin
- Exjade
- Opioids
Very insightful information, thank you for sharing 
My genotype is SC and I feel weak and exhausted every now and then. I have poor knowledge as to what to eat, how to take care of myself and especially what to do with my eyeballs to be white. The only medications I take are paludrin and folic acid. Doctors said I don't need more than that because I only have the trait and not the disease but I feel sick, tired and exhausted everyday despite the fact that I take those two drugs daily. I need your advice on medication, lifestyle, nutrition and general knowledge of SC genotype. I've been battling with this on my own all of my life.
Hi Jade, Have you seen a Haemotologist Consultant? If not and if you live in the U.K., you can ask your GP to refer you to one so you can be properly assessed. Hopefully they will able to help you cope with your exhaustion etc with medication and help from a pain management team. I am not a Dr so I can't advice you on the medication you may need.Everyone is different. Generally, you need to drink lots of water to keep hydrated, eat plenty of vegetables and try and avoid processed foods. Make sure you are warm as the cold can bring on a crisis. Try and keep active but don't over do it! Make sure you get plenty of rest. Don't be ashamed to ask your friends and family for help when you feel exhausted and can't cope. Goodluck and I hope you feel better soon.
Thank you
I've seen a Haemotologist before he was d one that prescribed folic acid and paludrin(proguanil) medications for me. He was the one who said I don't need a special treatment more than that since am not a full blown SC. Am in Nigeria.
Ok then you need to see another Haemotologist to get a second opinion. I know that may be difficult in Nigeria, but you have to find a Dr. that is sympathetic to your problems whether you have full blown SC or not. If you were in the U.K. I could give you more advice. You need to take pain medication that is prescribed by a Dr just so you can control your pain. I am sorry that you have not found the help you need as yet, but don't give up. Keep trying and I wish you the best of luck.
There is a Sickle Cell Foundation Nigeria. They have a Facebook page. facebook.com/sicklecellfoun.... Please contact them and see if they can help you.
Is there any places like that in Charlotte nc
Hi Jessie, I am sorry am not sure because I live in the United Kingdom. I do know there are good hospitals that are knowledgeable about SCD in Atlanta, Georgia. Try google in your area to locate haematologists in your state. Hope you find help soon. Take care
Jessica I'm here in Charlotte i can show you where to go my boyfriend he's scd and my daughter she's 5month old she's sct i can help you just. Email me djemima858@gmail.com
