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  • medication for HCM

    [medication for HCM]

    Author: Lori (---.client.insightBB.com)

    Date: 11-22-02 18:43

    Dear Lisa,

    I have been diagnosed with HCM for 10years. I have seen many changes in the management of this disabling disease. Now I currently have an ICD and on ToperolXL (100mg) and Amiodorone 400mg. I am having concerns of the long-term affects of the amiodorone. This was a wonderful drug that made my quality of life much better. Being on the drug for 7yrs I have concerns. Now my beautiful 18-yr. old daughter was diagnosed 3 yr. ago and she is taking Toperol and has an ICD. If you have any new info re: meds please let us know.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: medication for HCM]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-23-02 02:34

    Dear Lori,

    400mg is a very large dose and it is my understanding that most people are started at 400 and then shifted down to 100 after several months. You should be on the lowest dose that works for you. How old are you? Do you get bloodwork every 6 months to check your liver and thyroid function? This is also needed with amio.

    There are several newer antiarrhythmia drugs, most notably Betapace (sotalol) and Tikosyn (dofetilide). These are much, much less toxic than amio and work well for lots of people. However, they should not be used unless your daughter really needs them ---is she having atrial fib or other arrthythmias?

    It sounds like you should both be seeing a specialist. Please call the office at 973-983-7429 and they can help you find someone.

    take care,

    Sarah

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    [Re: medication for HCM]

    Author: Lori (---.client.insightBB.com)

    Date: 11-23-02 03:14

    Dear Sarah,

    My starting dosage of amio was 1600mg which I was hospitalized for 7 days to start on the meds after a load dose I went down to 200mg daily but this will not control the arrhythmias. I having been going between 300 and 400mg. My labs are ckd every 6mo. at this point they are all normal. Do you see the Toperal being used?

    I am 42 years old.

    What do you consider a specialist? My daughter and I going to different doctors.

    We both have EP and Cardioligist thru Indiana University (Krannert Inst.of Cardiolg)

    Do you suggest others. and or a second opinion?

    We both have many years to control this disease.

    I apprec. the book my daughters Dr. gave us. It was written by Dr. Myron. This was nice to read the words of things we deal with on a daily basis.

    Lori

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    [Re: medication for HCM]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-23-02 06:37

    Dear Lori

    Oh, I thought you were asking about amio replacements. Toprol is a beta-blocker and it is good that your daughter is on it. BBs soften and slow the heart rate and help prevent palpitations. Very good drugs --just let her know it is very bad to miss a dose or stop suddenly as it can make you worse if you do that.

    An HCM specialist is someone who sees a lot of HCM patients and keeps up on the literature and ideally has a relationship wtih the HCMA.

    HCM is very complicated and we tend to recommend that everyone see an HCM specialist at least once just to make sure that they are getting the best treatment possible.

    Sarah

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    [Re: medication for HCM]

    Author: Jason (---.ushwy1.com)

    Date: 11-23-02 19:36

    Hello, just wanted to know. What is so bad about palpitations. Do they cause you any harm? Thank you

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: medication for HCM]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-23-02 20:13

    Dear Jason,

    Palpitations is a generic term for the odd, occaisional irregular heart beat. There are many different cardiac arrhythmias, some are benign and others are fatal. Beta-blockers are not designed to prevent the really bad stuff, but they do tend to cut down on the medium level stuff and and have been known to save lives, especially in heart attack patients (bbs lower blood pressure and improve the efficiency of the heart beat).

    I hope this answers your questions.Here is a link to a list of arrhythmias: http://www.clevelandclinic.org/heart...tric/types.htm

    Sarah
    NOTE: This is a post from the previous forum message board.
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