Tag Archives: losartan

Losartan vs Atenolol Trial

Those of you in the Marfan community have probably heard about the losartan vs. atenolol trial, but since it’s Have a Heart Month I wanted to talk a little bit about it and give space for a trial participant to discuss it as well.

Background: Atenolol is a beta-blocker, and right now beta-blockers are the standard of care for Marfan patients medication-wise. As of now, there is no way to stop the aorta from growing, but researchers have found that decreasing the body’s blood pressure tends to help slow down the aortic growth. Beta-blockers like atenolol lower the blood pressure, which is why they’re used. However, there has never been a wide-scale, double blind trial done to prove that beta-blockers are, in fact, an effective option.

Without getting too technical, several years ago Dr. Hal Dietz from Johns Hopkins created mice with Marfan syndrome and tested the drug losartan (cozaar) on them. Losartan is a blood pressure medication (an angiotension receptor blockers) that has been on the market for a long time. Dietz realized that it affected a protein called TGF-B, which is over-expressed in Marfan (leading to the overgrowth of several structures in our bodies, like our bones). Dietz theorized that using losartan to curb the expression of TGF-B might prevent various complications from Marfan, especially the overgrowth of the aorta.

In 2006, Dr. Dietz unveiled the results of his mice trials at the National Marfan Foundation conference in Philadelphia. Losartan had kept the aortas at a normal size! It was now time to test the drug on humans, to see if it would produce the same results.

Now: The trial has been going for 3 years now; the first round of participants is finishing up. However, the trial is still 104 patients short of the 604 it needs. Enrollment ends Jan. 31st, 2011. The requirements for trial enrollment are:
– Be between the ages of 6 months and 25 years at the time you enroll
– Have a diagnosis of Marfan
– Not be pregnant
– Not have had any previous aortic surgery
– Not have any serious side effects from either atenolol or losartan
– Not need to take a beta blocker for any reason other than your dilated aorta
– Be willing and able to travel 5 times over 3 years to the study site for all study echocardiograms and examinations.

Financial assistance IS available to go to ANY trial site you want (not just the one closest to you). Go here for more information about the trial. You can also contact Jennifer Buffone at the NMF at jbuffone at marfan dot org.

Kari’s Story: Kari is a fellow NMF volunteer. Her daughter, Haley, has Marfan and is preparing to finish up with her time in the trial. I asked Kari to write a bit about their family’s experience.

After a great deal of soul searching, we decided to enroll Haley in the Losartan/Atenolol clinical trial three years ago. While we were tempted to go to her local cardiologist and ask him to place our daughter on Losartan, we felt it was important to learn how well the drug works and whether it has troubling side affects first. We agreed that the clinical trial was the best way to determine whether or not this was another effective treatment for those with Marfan syndrome.

We felt comfortable enrolling Haley in the trial when we discovered how thoroughly the patients would be monitored throughout the study. Everyone from the lab and imaging techs, to the clinic coordinator and cardiologist, truly cares about the well being of our daughter. You would never guess that Haley isn’t one of their regular Marfan patients. She is treated as a person, not a number, with professionalism and compassion. In addiiton, the staff always takes the time to answer our questions, address our concerns, and promptly answer our e-mails.

We also are impressed with how welcome and comfortable they make Haley feel at each and every appointment. She enjoys our trips to the Marfan clinic and I know she’ll miss seeing her other “Marfan doctor” after her final appointment this June.

Our appointments have always started on time and they traditionally last under two hours (including an echocardiogram). The clinic coordinator also checks in with us between appointments to make sure everything is going okay with Haley. As a parent, I appreciate that. (We have also maintained our annual appointments with Haley’s local cardiologist throughout this process.)

We do not regret our decision to enroll Haley in the trial one bit and are so excited that the trial has finally reached 500 participants! However, we desperately need 104 more enrollees before they can start analyzing the data. I encourage all parents of children with Marfan syndrome to thoughtfully consider enrolling their children in the trial. They will receive top-notch care at some of the best facilities in the world. (In addition, if your child did not fully meet the trial requirements 1-2 years ago, I recommend getting them re-checked, since children tend to grow “in and out” of the Marfan diagnosis.)

Our family is so grateful for all of the incredible research that has transpired since Haley’s diagnosis. The promising research of Losartan and its affect on Marfan mice has brought a renewed sense of hope to the Marfan community. This clinical trial will help us determine whether or not this hope should indeed become a reality.

PLEASE, if you or your child is eligible, consider enrolling in the trial. Your participation can help change the future for Marfs all over the world.

Also, don’t forget to enter the Have a Heart Month giveaway.

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End of an Era

Anyone who knows me well (or at least reads my Facebook page) knows that I am a huge proponent of breastfeeding. I think everyone should give breastfeeding a try. I think it’s a travesty that our country’s healthcare system is not more breastfeeding-friendly. Women consistently get incorrect information about feeding their babies, if they get any information at all. I’ve seriously considered becoming a lactation consultant, although not right now because I’ve come across a different, very cool, project, which I’ll post about later. (I’m all about re-inventing myself, a la Madonna, except without all her trashiness.)

Anyway, I’ve had a lot of discussions with classmates and friends about reasons to breastfeed and the mechanics of it, but I don’t think we as a breastfeeding community talk about the end of breastfeeding very well, and that’s unfortunate. After making it through 6 months of exclusively breastfeeding Menininho I just assumed I’d go at least another 6, and that at some point after then he would just gradually prefer solids over milk and one day he’d quit taking the breast totally and that would be that. Back in May I read one of blogger Cjane’s posts (Mammorial Day, Part 2), where she described breastfeeding her son one night and feeling impressed that that was the last time she’d nurse him and that she’d better enjoy it. I cried when I finished the post. I couldn’t imagine knowing ahead of time when I’d wean my baby. Heck, I couldn’t imagine weaning my baby.

About a month ago I got an email from my cardiologist. Based on the results of a host of tests I’ve had run (you might remember the stress test I blogged about), he recommended I get on a drug that is currently being tested in Marfan syndrome patients. My doctor couldn’t promise that it would work for me, but case studies have shown it to be promising and it’s possible that it could even heal some of the problems with my heart, not just halt the progression. The only caveat is that in order to start taking this medication I would have to stop breastfeeding Menininho.

I was really torn over what to do, and I admit, part of me was nervous about what people would think or say when they saw me giving Menininho a bottle. Would they judge me with their little frownsmiles (you know what I’m talking about!)?   Would my baby still love me?  Would moving him to formula cause some mysterious kind of damage down the road that I couldn’t yet anticipate?  I didn’t feel like I had many people to discuss this with except, of course, my husband, who has always been incredibly supportive of me breastfeeding.

In the end though, I knew what I had to do.  Menininho is not going to remember whether I breastfed him, but he will remember whether I had enough energy to play with him. I owe it to him and any potential future children to see if this medication will work for me (please pray that it does!).

So Wed. night I nursed Menininho for the last time. It was so hard. I cried the entire time. I think he sensed it was his last time because he nursed for a lot longer than usual. For a brief moment I again questioned my decision. But in the end, I felt really good about it. We had a bit of a rough start with the formula but now Menininho gets excited to see me coming with the bottle and he can, and prefers to, feed himself.

I will NOT miss the weaning process. This may just be because I weaned him relatively quickly, but the past few weeks have felt like the first trimester of pregnancy all over again (minus the nausea). I’ve heard it will go away in a week or two.

As moms, we’re hard on ourselves about a lot of things. Whether or not we want to admit it, we’re hard on each other about a lot of things. Let’s not let breastfeeding be one of them. Don’t get me wrong: I’m not going to give up on educating women about breastfeeding, because I believe that in most situations breast is best, but at the end of the day happy moms = happy babies = happy families, and that is way more important. We should all embrace the decisions we make.

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