Having a chronic illness comes with many challenges. The main goal is to stay healthy and live as normal a life as possible. The additional goal of a sickle cell patient is to have as few pain crises as possible.
You want to make sure you do nothing to trigger that pain. Eating a proper diet, managing stress, getting plenty of fluids, getting the proper rest and taking your meds are all key elements to a life with less pain.
Since the summer of 2020, Adakveo, an infusion medicine, has come to market and it’s a game-changer as far as managing sickle cell pain.
It is given once a month by an IV infusion and is meant to impede pain crisis. “It prevents the abnormal stickiness of the red blood cells from causing more pain,” explains Dr. Lewis L. Hsu, MD, PhD, Professor at University of Illinois at Chicago, Pediatric Hematologist. “The clinical trials of this drug were very promising in cutting down sickle cell pain episodes.”
One great advantage of getting an IV medication is that you take it once a month and you don’t have to worry about forgetting to take a daily pill. “If the patient’s weight changes, IV is a good way to adjust the dose because the patient is right there getting the IV and you can change it right there. Compare that to a medicine the patient takes at home – you’d have to figure out the dosing, tell the patient, prescribe it to the pharmacy and in hopes that everyone remembers and you got the right dosage,” continues Dr. Hsu. “[Adakveo] does not seem to require a monitoring of lab test to look for organ damage.
It does seem to need monitoring during the infusion to see what kind of infusion reaction there can be because this is an antibody type of medicine. Sometimes when you infuse an antibody product, the body reacts to it. That is very common to see side effects of those sorts and the infusion room staff will watch the patient closely.”
After the first couple of doses, the infusion will continue to be given monthly until it is determined whether a more or less frequent schedule is needed. Adakevo stays in the system without the drug diminishing completely by the end of the month.
Dr. Hsu explains, “Right now, we are just going to infuse it monthly. There have not been any studies of a schedule other than monthly, so we don’t know how much better it might be if it’s not given monthly.
The whole idea is that it’s supposed to be preventive. The effect is waning by 3 ½ weeks by maybe 50 percent, but it hasn’t completely gone away. The idea is