Sickle Cell Anemia?

Question

I have SIckle Cell and one thing that ticks me off is when I tell Dr.'s that the pain meds they give me don't work and they're like well we'll just up the dosage (like I haven't already when in enough pain) or they're like take it in conjunction with something else (like I haven't already). The pills still don't work and it's like they won't prescribe anything else. I'm like come on I'm 24 and you have been giving me the same meds for YEARS, does it occur to you that my body is so used to them that they no longer have any effect?? Tylenol w/ codine, prescription ibuprofen 600mg, even oral morpine, they are all jokes to me. Even percasets won't effect me. What in the he-zee can I do?

Answer 1

I'm 26 and I have sickle cell too, I was diagnosed when I was 1year old. I had the exact same problem for years, I was in the ER a few times a week during high school. Anyway, I found a good combination of drugs that work for me. I take 120mg of Oxycontin twice a day (240mg total), 10 mg of Flexaril 3 times a day, and I moved up to Tylenol 4 (no I don't mean T3), 3 to 4 times a day (about 6 -8 daily) . Also I had a lot of success with Hydroxurea, it's the most common treatment for sickle cell, it works with our fetal hemoglobin and helps us to have less crisis. You probably will never be rid of all of your pain, I still go the the ER around 2-3 times a month. Did you ever try relaxation techniques? I know it sounds like crap but I swear it helps, anything that takes our minds off of the pain helps more than you can imagine. You must occupy your mind with something else. You may know this already, but the best thing I can do is pray, God helps more than anything. I'll be praying for you too. You may also want to check out some sickle cell support groups having someone who can relate is priceless. God bless u : )

Answer 2

Very intelligent question. Yes, it should reduce expression of the sickle cell anemia trait. The defect responsible for sickle-cell anemia is an autosomal recessive gene on chromosome 11. A person who receives the defective gene from both father and mother develops the disease. A person who receives one defective and one healthy allele remains healthy, but can pass on the disease - a carrier. If two parents who are carriers have a child, there is a 1-in-4 chance of their child developing the disease and a 1-in-2 chance of their child just being a carrier. The gene is incompletely recessive, so carriers may have some sickle cells. People of African ancestry are more likely to carry the trait than people of other races, so interracial mating should dilute the defective gene and reduce the risk of the full blown sickle cell anemia disease.

Answer 3

Doctors treat most complications of sickle cell anemia as they occur. Treatment may include antibiotics, blood transfusions, pain-relieving medicines, other medications and possibly surgery, such as to correct vision problems or to remove a damaged spleen.

Experimental treatments
In the past 30 years, scientists have gained insights into the symptoms and causes of sickle cell anemia. New information about the disease is leading to newer treatments. Researchers are studying:

Gene therapy. Because sickle cell anemia is caused by a defective gene, researchers are exploring whether correcting this gene and inserting it into the bone marrow of people with sickle cell anemia will result in the production of normal hemoglobin. Scientists are also exploring the possibility of turning off the defective gene while reactivating another gene responsible for the production of fetal hemoglobin — a type of hemoglobin found in newborns that prevents sickle cells from forming.
Butyric acid. Early studies show that this commonly used food additive may increase the amount of fetal hemoglobin in the blood.
Clotrimazole. Normally used to treat fungal infections, this over-the-counter medication helps prevent a loss of water from red blood cells, which may reduce the number of sickle cells that form.
Nitric oxide. People with sickle cell anemia have low levels of nitric oxide, a gas that helps keep blood vessels open and reduces the stickiness of red blood cells. Treatment with nitric oxide may prevent sickle cells from forming

Answer 4

have you tried benadryl with the shot. If not, try going to another doctor for help, preferably a doctor that knows what their doing. I have the trait of Sickle cell and it runs in african-americans more. Take care of yourself, and I know your only 24 but everything will be ok.

Answer 5

Get a diffrent doctor. Or sometimes they have to lower you dosage by like a ton and let that uild up flush out befroe they are effective again. I have grand mal eplipsy and had to go through that. I had a tollerance to my meds, so they lowwered my dosages and i got siezeures again and all sorts of non fun stuf for like a month so that i could contiune taking my meds and not get them for 6 years. I know it tottaly sucks, but hey... you gatta do what ou gatta do.

Answer 6

You should definitely find a Hematologist that understand the pain that you feel. It stinks to find another doctor but when the one you are seeing doesn't take you seriously, you have to. I have Crohn's disease and I had to change GI doctors because I was not being taken seriously. It saved my life. Good luck.