Genetic's doctor spoke of two beta blocking drugs for 'aorta root dilatation'. Atenalo and Cozaar. In reading about these in pill book, I already suffer from cold spots in the extremities, kidney problems at times and several of the other nasty's listed as side effects, etc. Have a hard time keeping weight on me[130 lbs -5' 5 1/2"], low body temperature . Blood pressure today-108 / 60. I do low impact exercises in the water, tai chi, and walking with in my mobility limits, and eat Heart Healthy. Don't drink or smoke, and limit caffeine tremendously. I will be going through another echogram soon to determine if the dilatation numbers have changed from 6 years ago. I am 53 and managed to NOT take any drugs dues to drug allergies in regards to the Elhers Danlos syndrome Type 3 hypermobility. What are the odds of the heart rupturing at my age if one doesn't take these drugs? Can a person stay on the lower side of the dose 25 - 50 mg's and still have them work in the prevention catagory? Any one out there taking either of these drugs for Elhers Danlos?
I don't have EDS, but my aortic root is at the high end of normal, and I might have some mild degree of connective tissue problem (not enough of anything for a diagnosis), but the enlarging of my aorta was completely stopped by taking max dose of valsartan (similar to cozaar (ARB)). Many other people I know w/ connective tissue problems like MFS have had the same results, or aortic shrinkage. I have not yet heard of anyone taking a proper dose of ARB and continuing aortic enlargement. Perindopril, an ACEi, is another drug to look into (8mg, max dosage).
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