Inderal LA

[annamc]

Hi, anyone take Inderal LA for HOCM? I do and have been since age 6. I take Warfarin Sodium as well b/c I have an Artificial Valve. I take 80mg of Inderal LA twice a day! I take 2mg of Warfarin, which varies from 2 to 1mg.

Is it normal to have low blood pressure with HOCM? What should it be?

Is loss of appetite a symptom from either of my medications or HOCM?

Embarrassing to me to mention . . . but is diarrhea a side effect from my medications?

I know that it is not good for HCM patients to lose body fluid and I had major diarrhea for years without help. I was just dismissed by the doctors. Come to find out that I have Irritable Bowel Syndrome and take Equalactin for that which relieves the terrible pain in the intestine and stops the diarrhea most of the time.


- Anna

[Lisa Salberg]

I would suspect the weight loss is from the IBS not the HCM.
Inderal is a rather common drug and actually a very old drug in terms of how long it has been on the market. It can have some side effects that some newer drugs so not have. Low B/P is common in HCM and can be aggrivated by some medications.
I would suggest a long talk with your cardiologist and a consult with am HCM specialist to get things straightened out.
Best wishes,
Lisa

[Glen Beamish]

I took Inderal for 30 years until I switched to Atenolol last year.
Diarrhea was a big problem for me for those 30 years.
I had stomach cramps often and had to take days off work because of it.
My family doctor thought I was lactose intolarant.
Since I switched to Atenolol last year the diarrhea has completly disappeared and so has my supposed lactose intolarance.
I know it's not a pleasant subject to talk about, but don't ever be embarrased.
Your embarrasment could just turn a light on for someone else.

[Dee]

My son has been taking this since 6 weeks of age and has always had very loose stools. I've always attributed it to the medicine. He normally drinks TONS of fluids tho also, so I wonder sometimes if that isn't part of it also.

Dee

[Lisa Salberg]

There are some great insights...
Thanks for sharing everyone!
Lisa

[annamc]

:) Thanks everyone for your reply. I appreciate it!

[kathyn2]

Inderal gave me diahrea also and upset stomach. I can't take it. Not worth those side effects. I would beg for a change in medicine if I were you! You may not even have IBS if you get off of this drug.

[annamc]

If I switched from Inderal LA to another drug, is it safe? I might end up with more side effects or a change in my heart. Is there another drug that is long acting that I could take in this class of beta blockers?

[Lisa Salberg]

PLease read my post under DI - we really need to work on getting your care up to 2003... call the office we can chat.
Lisa

[Sarah]

Inderal is the very first beta-blocker and I highly recommend getting off of it pronto.

Toprol XL is a newer, long-acting beta-blocker worth trying. I was on it quite side effect-free (except for the unavoidable slight sluggishness from time to time).

I don't know how many other beta-blockers are long acting, but almost anything is better than Inderal.

jeez! :?

S

[Lisa Salberg]

Sarah... not so fast... many people do fair well on it and for long periods of time. While there are some issues here that may suggest a new drug may help...it is not a BAD drug, simply an older one.
Lisa

[Sarah]

Yeah, Lisa is right. As moderator, it is my duty to give every drug their due and I know some people do just fine on it and I know kids should be on it so they can get blood levels, BUT BUT BUT the number of people who do well on it are vastly outnumbered by those who don't and when there are scads of other options (unless you need a blood level) I just don't see the point of bothering with it AND in many (over-generalizing alert here) cases, a doctor who is prescribing Inderal is not on the ball with current treatment protocols for HCM.

And I'm biased. :? Plain and simple. Sorry.

later,

S

[Lisa Salberg]

A little bias ..yes my dear I think so.
I can not agree with your last post 100% - I know many who are doing just fine on inderal and have for 30+ years in some cases...

I do think many other drugs work better in many cases..but as always..remember we are all a little different (OK some of you saw that coming) :wink:
Lisa

[annamc]

Just wanted to let you all know that I have decided to remain taking Inderal LA b/c it has worked so well for my heart. Aside from the diarrhea, which may or may not be the medication. IBS runs in my family and I'm assuming this is the case.

One more question, since HCM is genetic, and my parents haven't ever been diagnosed with it, could they have it or just carry the gene? Also, does this mean my brother will get HCM? He is 18 now and has never been diagnosed. He doesn't appear to have any of the symptoms.


Thank you all, Annamc

[Lisa Salberg]

YOur parents can carry the gene and may not HAVE HCM... When was the last time your parents were screened? Has your brother ever been screened?
Has anyone in your family ever had heart problems (grandparents, aunts, uncles??)
WHile HCM is genetic it is possible that you are the 1st in your family to have the gene.
Lisa

[Sarah]

L,

ok, ok, ok, Inderal is ok. I hear ya.

However, how often is someone the first in their family to have HCM? Just curious is there are stats on that.

ANNA--- It is an echo that determines if you have HCM or not, so being without symptoms is not enough. Your brother should get an echo every few years as a precaution. Your parents should have ehcos, too, if they haven't had them in 5 years or so.

take care,

S

[Dee]

I'm also wondering about the statistics about having it just all of a sudden pop-up in a family. We haven't found ANYONE in the family tree that has HCM other than my son Dylan. The closest *maybe* is my maternal great, great grand mother had a few blue babies and Dylan's paternal 2nd cousin had Tetralogy of Falot. Ok, and I still haven't had my echo yet :oops: and I'm running for the door now before Lisa yells at me again. :!: :!: :!:

Dee

[Lisa Salberg]

DEE what are you waiting for???
dont get me started....
shall I come and drive you myself to your echo...
WELL???????
Lisa

[mflanagn]

My children are the only family members with HCM in both our families, BUT they are also diagnosed with Noonans Syndrome which has heart disease associated with it 50% of the time. The genetics specialist we consulted thinks that's why my kids have HCM. Of course, there is no genetic blood test to confirm either of these conditions. Most of my family has been tested and cleared of HCM.

Interesting, huh?!

[annamc]

Inderal LA may well be one of the first beta blockers, but it has worked efficiently for me these past years. I am assuming this is good for me. I've looked up the other beta blockers and issues concern me. I'm not going to just switch from this drug to another one b/c it is newer. The side effects were just the same and I run the risk of complications from a switch. Not wanting to risk it at this point. Just got rid of the SOB by my doctors instructions to take 80mg of Inderal LA twice a day according to a New England Journal Study.


:D All is well at the moment, Anna

[Sarah]

If it ain't broke, don't fix it! :shock: :D :wink:

S

[Toogoofy317]

DEE, Lisa will do it :!: She flew all the way to boston to meet me to make sure I got to a specialist. so don't think she won't because she will!

Mary S.

[annamc]

Sarah:

YEAH, if it ain't broke, don't fix it!


Toogoofy317:

LISA did that :!: WOW, she is a wonderful person. :)


- Anna

[annamc]

Why are there so many different beta blockers if they all seem to have the same side effects?

Since it is said all people are different, does that mean that if I switched from Inderal LA to Toprol XL, I may feel an improvement or get new side effects?

If someone has an ICD, do they still need to take medications?

Does anyone know if the Toprol XL, which I think is supposed to last 24 hours, really last 24 hours or start wearing off before waking up?

Okay, that's all my ?'s for now. I'll check back tomorrow.

Anna

[Reenie]

Why are there so many different beta blockers if they all seem to have the same side effects? Because they are in the same class of drugs.

Since it is said all people are different, does that mean that if I switched from Inderal LA to Toprol XL, I may feel an improvement or get new side effects? Yes, exactly. Your body chemistry is unique, so the way you react to a particular drug is unique to you.

If someone has an ICD, do they still need to take medications? In general, yes. Many times the meds are to soften and regulate the heart beat. The ICD does nothing but monitor you.

Does anyone know if the Toprol XL, which I think is supposed to last 24 hours, really last 24 hours or start wearing off before waking up? I have no experience with this drug, but with many beta blockers your body can tell when it's time for the next dose.

I hope this helps you.

Reenie

[annamc]

Reenie:

Hi! Thanks for the reply. I guess I couldn't understand how the same category of drugs could affect you differently if they were all beta blockers. If that is the case, I may, if doctor approves switch to a new long acting drug. However, at this time, I have no need to do this as I have no SOB as mentioned above on this thread. Though, I do seem to have stomach pains a lot and I do eat something prior to taking the Inderal LA and it usually helps.

Hm, so let me see if I get this, an ICD is just an 'insurance policy' that in case your heart is going to beat dangerously that it shocks it back. Did I state that right? I don't have an ICD, but just wondered.

You said your body can tell when its time for the next dose. Well, mine doesn't tell me. I don't know why that is though. I'm lucky though b/c the doctor I had prior had me on only 60mg long acting beta blocker and it wasn't enough. I only took it once a day and it had worn off before morning, which was dangerous. I could tell then though that I wasn't getting enough medicine to stabilize my condition and make me feel better.


I'm sure glad I have such a support system on here and somewhere I can come where people understand what I have. I needed this a long time ago.

Anna

[Reenie]

Hm, so let me see if I get this, an ICD is just an 'insurance policy' that in case your heart is going to beat dangerously that it shocks it back. Did I state that right? I don't have an ICD, but just wondered.

You said your body can tell when its time for the next dose. Well, mine doesn't tell me. I don't know why that is though. I'm lucky though b/c the doctor I had prior had me on only 60mg long acting beta blocker and it wasn't enough. I only took it once a day and it had worn off before morning, which was dangerous. I could tell then though that I wasn't getting enough medicine to stabilize my condition and make me feel better.

Anna

Yep, the ICD is your insurance policy. You've got that right. Not everybody can tell when the next dose is due, but a lot of people can. Just keep working with your doctors. Take care. :)

Reenie

[annamc]

I understand now. All beta blockers are the same, but work differently on each individual b/c of the person's body chemistry.

Thanks again Reenie! :wink:

[Reenie]

All beta blockers are the same in that erythromycin and clarithomycin are the same and doxycyclene and tetracyclene are the same. They are close cousins. They are formulated a little differently, but are the same. Understand? And you're quite welcome. :oops:

Reenie

[Sarah]

I recommend reading this site: http://www.heartcenteronline.com/myheartdr/common/articles.cfm?ARTID=331

for a very good explanation of why beta-blockers are not identical drugs and what they do and why.

S

[annamc]

Thanks Reenie and Sarah! Sarah, great link![/b]