Celiprolol is in a family of drugs called ‘beta-blockers’. In general, these medications lower your heart rate and decrease your blood pressure. Many blood pressure reducing medications that have been considered for use in vascular EDS. This includes other beta-blockers as well as angiotensin processing blockers or receptor blockers(1); both of these are readily available in the United States. The goal with any of these medications is to reduce your blood pressure to the normal, or low-normal blood pressure range(1).
What makes celiprolol unique compared to any other beta-blockers or other blood pressure medicine is that it is the only medication that has been studied in a randomized clinical trial for vascular EDS(2). This trial asked the question, "Compared to getting no treatment at all, does using celiprolol decrease the number of vascular events?" This trial is known as the BBEST Trial, which stands for ‘Beta-Blockers in Ehlers-Danlos Syndrome Treatment’(2). It is because of this trial that some physicians, particularly those in European countries such as France, are now recommending the use of celiprolol for the treatment of vascular Ehlers-Danlos.
What is Celiprolol?
The Beta-Blockers in Ehlers-Danlos Syndrome Treatment (BBEST) Trial
n 2010, researchers in Europe published a landmark study known as the BBEST trial. The study analyzed the use of a medicine called celiprolol to see if it could help improve outcomes in patients with vascular Ehlers-Danlos syndrome. After this landmark trial, celiprolol became the standard of care for vEDS in France and other European countries. In April 2019, the researchers responsible for the study published new results, which tracked vEDS patients on celiprolol for up to 17 years. FIGHT vEDS will publish these new results and a patient-friendly interpretation once they become available - be sure to subscribe to be notified when these results are released to the public.
Should I be on celiprolol?
There is some debate within the community of doctors that study and treat vascular EDS. Some doctors feel that since celiprolol is the only medicine that has been studied in vEDS (and showed a benefit in that study), that if you can be on celiprolol you should be. Other doctors feel that the celiprolol study had flaws and that there are other beta-blockers available in the United States already which can work just as well. Management of your vascular Ehlers-Danlos syndrome (including choice of medications) should be discussed with your treating physician.
Where can I get celiprolol?
Currently Celiprolol is not available in United States, as it is not an FDA approved drug. There is a pharmaceutical company named ACER Therapeutics who is in the process of trying to get FDA approval for the drug in the United States.
While the drug can be accessed through online pharmacies, those pharmacies require a written prescription from your physician, who may or may not be comfortable prescribing the drug ahead of FDA approval. If you are considering celiprolol therapy, you should discuss this and other treatment options with your physician.
When will celiprolol be available in the United States?
Acer Therapeutics, a pharmaceutical company based in Cambridge, MA, is currently pursuing FDA approval of celiprolol for vascular EDS using the data from the BBEST trial. Acer Therapeutics is currently in discussions with the FDA and, if approved, the drug would likely become available within the next year or two. We will keep our subscribers informed of their progress (subscribe below).
Want to know when celiprolol is available in the US?
The next several months will be critical for the FDA approval of celiprolol for vascular EDS. Subscribe to FIGHT vEDS below and receive updates on:
New celiprolol research currently underway
The FDA approval of celiprolol
When it will become available for vascular EDS in the US
Byers PH, Belmont J, Black J, De Backer J, Frank M, Jeunemaitre X, Johnson D, Pepin MG, Robert L, Sanders L, Wheeldon N. 2017. Diagnosis, natural history and management in vascular Ehlers-Danlos syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics). 175C:40-47.
Ong KT, Perdu J, De Backer J, Bozec E, Collignon P, Emmerich J, Fauret AL, Fiessinger JN, Germain DP, Georgesco G, Hulot JS, De Paepe A, Plauchu H, Jeunemaitre X, Laurent S, Boutouyrie P. 2010. Effect of celiprolol on prevention of cardiovascular events in vascular Ehlers-Danlos syndrome: A prospective randomized, open, blinded-endpoints trial. Lancet 376: 1476-1484.