Lisinopril as a treatment for HCM?

[geoff]

I'm a 60 year old male with nonobstructive HCM and normal blood pressure. My cardiologist has put me on lisinopril not for my blood pressure, but for my HCM. He explained that lisinopril would prevent or reverse changes in my heart in the future.

I've not seen anything online about lisinopril as a treatment for HCM. To put it bluntly, does my cardiologist know what he's doing? Is there research that suggests that lisinopril can have a positive effect on HCM?

Geoff

[EmilysDad]

My daughter was put on Lisinopril by Dr. Maron at Tufts to "relax" the heart muscle and improved diastolic function. I think this is a very standard approach to managing HCM.

[Linda]

Geoff - Welcome to the HCMA. Please call the HCMA office and talk about the meds you are on and your particular situation. This med is not considered to be a first line treatment for HCM, but things change over time for each person.

Best wishes - Linda

[Lisa Salberg]

NO... lisiniopril is NOT a treatment for HCM as decribed by your doctor. Please seek the opinion from an HCM expert... in most HCM lisinopril is contraindicated.
Lisa

[Pam Alexson]

For me lisinopril has been a last ditch effort after several years following removal of my dynamic outflow obstruction via septal myectomy to control the worse symptoms of diastolic heart failure and it has worked to do just what my HCM EXPERT ( Martin Maron) and myself have expected it to do. It has allowed me more comfort and a tremendous help in controlling lower leg edema. I have had it added to my med regime for 1 1!2 years now... along with atenolol, diltiazem, sotalol and lasix . As Lisa and Linda pointed out IT IS NOT FIRST line treatment it is at times added to the regime in the later years or advanced cases of DHF. Most of the meds ending in "pril" are reserved for end stage or advanced heart failure.
Dr Ommen spoke on the use of ACE inhibitors in HCM patients at the 2008 HCMA conference and when it is indicated and for who. I believe to paraphrase him he said when the patient can no longer enjoy quality life activities and the DHF is standing in the way it may be time to quicken or shorten the filling time and allow the individual to live some of the life they desire.

This drug has offered me the stay of execution that I needed.
Regarding HCM hearts and these drugs.. IT IS SO IMPORTANT TO take what is said by, directed by and overseen by an expert .

http://www.mayoclinic.org/hypertroph...iansguide.html

[geoff]

Pam, thanks for the pointer to the Mayo clinic page, and thanks to all who've taken the time to comment on my situation.

One of the reasons I'm confused is that, in the information I've read so far, the various medications are intended, not surprisingly, to relieve the symptoms of HCM. I don't have any symptoms.

Throughout my adult life I've maintained a high level of physical fitness. Now I'm 59, diagnosed with moderate HCM and I'm on an elliptical machine for half an hour five to six times a week, hitting a sustained heart rate in the 150s (beats per minute), and occasionally hitting the lower 160s. Thanks to this strenuous exercise regimen, I can still take stairs two at a time.

So, in my case (and I have no idea how common my situation is) I not only am interested in what medications (if any) I should be taking, but what I would be taking them for. If there are drugs that will halt or reverse the progression of HCM (Is it always progressive?), great. But as far as taking something to relieve symptoms, that doesn't make sense to me since I don't have any.

Geoff

[Pam Alexson]

You are welcome and the studies are mostly on hypertensive individuals, heart failure individuals and have looked at fibrosis reversal for AF patients on lisinopril and not clearly studied thoroughly in HCM hearts.
Certainly as I fit a lot of the criteria of patients studied and have had hypertension, HF , AF and suspected sporadic fibrosis w/ small vessels it is a good test for me over time to see where I land.. Many of my numbers have gone down as well as the diameter of my left atrium ( which got me into a-fib initially). It will be well worth it if we see a beneficial trend over the next few years. Although I continue to be very symptomatic upon activity and therefore limited ... it still would be wonderful if some negative things continue to be positively spun by the lisinopril... then maybe quality life could begin and be more positive. So we will look at trends carefully.

Please be sure to work with someone who really knows HCM as these possible positive effects for me could also be a negative effect for someone else with HCM.

http://www.circ.ahajournals.org/cgi/...ct/102/12/1388

On this link check from page 53:

http://books.google.com/books?id=1YK...%20HCM&f=false

As far as progression .. yes and no.. as genetic HCM is a cellular based disease it can and often times is progressive.. it is the pace of the progression and what happens and how that is unique and therefore HCM has variable, unique to the individual, expressivity properties.

[LindaSo]

Geoff,
Why should you be on medication? Well, you have hypertrophy in your LV, which causes it to be stiff, and it needs to relax as much as possible when the chamber fills with blood which will be pumped out with ever heart beat. (it's like trying to blow air into a really thick rubber balloon). The thicker the ballon (stiffer) the less air you can get in. Same thing with the heart. Hypertrophy may or may not cause symptoms, but you have HCM which is hypertrophy of the LV.

Make a call to the HCMA office and speak with Lisa. Let her know that you are on Lisinopril and that you have HCM. She will provide you with the informatin that you need to get on the best possible treatment plan designed specifically for you. Most cardiologists don't really understand HCM. I too was placed on a "pril" and was immediately taken off, once I was a cardiologist who was an expert in managing this disease.

Linda

Linda

[CeeBee]

Geoff, since you're in Chicago, it will be easy for you to get to Mayo for an opinion there, and as many of us will agree, it would be well worth it. Check your insurance. Many plans cover the Mayo. Good luck.

[Register1]

ou are welcome and the studies are mostly on hypertensive individuals, heart failure individuals and have looked at fibrosis reversal for AF patients on lisinopril and not clearly studied thoroughly in HCM hearts.
Certainly as I fit a lot of the criteria of patients studied and have had hypertension, HF , AF and suspected sporadic fibrosis w/ small vessels it is a good test for me over time to see where I land.. Many of my numbers have gone down as well as the diameter of my left atrium ( which got me into a-fib initially). It will be well worth it if we see a beneficial trend over the next few years. Although I continue to be very symptomatic upon activity and therefore limited ... it still would be wonderful if some negative things continue to be positively spun by the lisinopril... then maybe quality life could begin and be more positive. So we will look at trends carefully.