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You and I are in somewhat similar situations. I'm 6'1", 190 lbs, used to be athletic before my diagnosis, not quite Marfan but some type of milder connective tissue problem, 3.8 cm aortic root, tricuspid aortic valve (we are fortunate that we do not have bicuspids!). Kind of throws a cramp in your style, doesn't it?
I came back from my cardiologist appt 6 months back with some more aortic growth, as usual. I was disappointed and said a prayer to the Lord Jesus Christ - and a day or two later, I got an email from the National Marfan Foundation regarding the losartan studies. Wow, what a direct answer.
I called my doc up and he prescribed me not Losartan but valsartan, which is a similar drug. He put me on a very light dose (80 mg/day), about half of what someone my body size would be taking in Dr. Dietz' study on adolescents this fall.
Fast forward 6 months - I had my follow-up echo last Monday. Thank the Lord - no growth. All my numbers were "identical to last time," according to my cardio. That is unusual because my aorta had been growing up until then. We cranked up the dosage to 160mg/day, which is more in line with what someone my size should be taking. I'm praying that at my next echo, the aorta will have shrunk. Who knows? I'm just happy for now.
I've spoken with other people taking losartan, and they also have stabilized their aortic roots. One lady I know was taking a pretty high dosage (300 mg of Avapro/irbesartan per day, the max you should take for that drug) and her aorta shrunk from 4.2 cm to 3.7 cm over a 6-mo. period.
None of that answers your question directly, but there is indirect, un-official basis for having a lot of hope for these studies. Talk to your cardiologist and see if he or she will prescribe some for you at a *HIGH* dosage. You're almost at the threshold for surgery, so tread carefully. I'll pray you experience the same kind of (seeming) success as me, if not better!
†
Nick
PS - The above does not constitute medical advice; disclaimer disclaimer ad nauseum ad infinitum.
If you do get to where you need surgery, make certain you go with a highly experienced surgeon who has done hundreds of aortic repairs. Cleveland Clinc has a great reputation. I had my surgery done by Dr. Vincent Gaudiani in California, he's done hundreds of such operations. I had a mini-sternotomy (only 4" near-invisible scar), and was on pump for only 25 minutes. Don't get someone who has only done a few of these!
We did an MRI and it measured 4.2. The echo has about a .2 margin for error. An echo last week measured the aortic root at about 4.3 or 4.4. My point is to get an MRI to baseline it first and then once every year or two just to check it.
I watched it grow .2 about every two years since it '92, it was 3.9 then. Don't worry about about a .1 or .2 change it's not that accurate.
I'm also hoping to see it shrink but who knows. I figure I have 7 to 10 years to see but who knows about that too.
not sure if you'll read this since you posted a year ago.
i have Aortic Aneurysm about. 6.cm
any drug or Losartan can help me
thanks