How to Access the Drug Irbesartan
Following the successful completion of the AIMS Trial co-funded by British Heart Foundation and the Marfan Trust/Marfan Association, in which many of you participated, the drug Irbesartan has been shown to be effective in delaying aortic root widening, and therefore prolonging life in Marfan syndrome. However, many people are asking how to access this medication for themselves and their children.
A father with Marfan syndrome, on Irbesartan as a result of the drug trial, rang to ask how his three-year-old son who is also affected could be put on Irbesartan. The child’s paediatric cardiologist is still using beta-blocker (Atenolol) as the drug of first choice, however this is known to cause side effects in children, such as fatigue and depression. Irbesartan, on the other hand, is very well tolerated by most children, and has very few side effects. However, there have been no drug trials in children under the age of six using Irbesartan, hence the doctor’s reluctance to prescribe it.
There have however been reports in literature of successful use of Losartan, a cousin of Irbesartan, with almost the same action, in seriously affected new-borns with Marfan syndrome. Since there are no drug trials of Irbesartan in children under six planned, we feel that the cardiologist could successfully trial Irbesartan in children under six, because of the severity of the condition if not treated. The earlier the child is treated, the better the long-term outcome, since the growing aorta responds well to this medication.
The paediatric cardiologist was contacted by a member of our Advisory Board, a Paediatric Cardiologist specialist, and an explanation was offered, together with a suggestion as to the amount of medication. The children in our AIMS trial were started on 75mg daily, and this was tolerated. It is a low starting dose, and the blood pressure and side effects if any should be monitored frequently until its use is established in the child concerned. It is more effective than beta-blocker, because it has 24-hour action with one dose in the morning. However, beta-blocker treatment also treats a tendency to palpitations. If the child shows any irregularity of heartbeat, it is probably better to start on Atenolol, and add Irbesartan as the child grows larger and can tolerate double medication.
If patients are having difficulty persuading their cardiologist to try Irbesartan, they should take our AIMS Trial announcement to their cardiologist and discuss this with them.
Photo by Kane Reinholdtsen on Unsplash
Nicholas and Ronnie Beer