If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Amiodarone

Collapse

About the Author

Collapse

Labbey Heart transplant on September 15, 2008 Find out more about Labbey
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Amiodarone

    Hi Everbody,

    Thanks to all who welcomed me to the site. It was greatly appreciated.
    And means so much to me!

    I was admitted in to the hospital again for congestive heart failure. What a mess. Long story as you all know, but heart rate went up after a breathing treatment... It was AFib. Started lopressor thru my IV, when that did nothing, started on amiadarone drip, to load it up, that wasn't working fast enough. Once in my room, I tried to get up and ended up collapsed on the hospital floor. I was just trying to do a test to prove to myself that I was just fine....Real smart, sometimes denial is not a good thing!

    I had to have a cardioversion done on Thanksgiving... Pretty wild, I did end up home in time for a late dinner. I was very lucky. I have never had the paddles before, makes ya think that's for sure. It seems nicer than the internal defribillator though, I will say that much, Must be because of the drugs. I don't remember a thing.....

    I am now on lopressor 25mlg and amiadarone, 200mlg twice a day, also lasix , these are new to my past year regimen. The amiadarone was at 600mlgs a day, but brought me down to 400 after about 7 days. My understanding of this is you shouldn't be on it too long.

    Wouldn't you know it really has been the only drug that has kept my arrythmias quiet. I took it last year also, but then i went into CHF and am hoping this drug had nothing to do with it! Does anyone know if this could contribute to CHF? Because after I was out of CHF my doctor took me off of it and I was just on Toprol, which is pretty much the same as Lopressor, right?

    Has anyone else had amiadarone as their primary drug? Isn't chf just when the heart doesn't beat right ? My doctor has once again brought up that, he sees me getting a transplant in the future.........Yikes!...

    I know that you shouldn't be on amiadarone for too long, this stinks for me because it really does work...... Any comments or advice on this would be greatly appreciated.... I know I wrote a lot again!... I was trying not to !
    diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

  • #2
    Re: Amiodarone

    Hi,
    I to am on Amioderone. Was started on it a couple years ago for A-FIB. After things going well for a year, I stopped it mainly because of all the possible side effects. Didn't work. Went back into A-fib, had to then go on Coumadin for six weeks then had a cardioversion. So now I take both Coumadin and Amioderone. Have been taking 200mg a day but am starting to have a few runs of A-fib. Dr. visit in near future, so I'll get the verdict then. Fortunately, I have not experienced any side effects thus far. Also take Toprol, lasix and Spirolactine
    Hope it works for you.

    Pat S

    Comment


    • #3
      Re: Amiodarone

      Hi

      I am so sorry to hear of your ordeal. But I am glad that you are out of the hospital and you were in time for Thanksgiving dinner, that is really great.

      A breathing treatment will do me in everytime. I'm always a little more anxious during spring time when the pollen is high, because of the asthma worries.

      I do not take Amiodarone, I never have. And I have CHF, so maybe it did not contribute to you having it.

      I really hope that everything works out for you.

      Best Wishes and Hugs

      Eileen
      49 yrs. old
      Diagnosed at 31.
      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
      My brother passed away suddenly at 34 yrs old from HCM.
      2 teenage children, ages 17 and 15.

      Comment


      • #4
        Re: Amiodarone

        Lisa,

        Hi.

        Amiodorone can cause many things to happen to ones body when taken for long term but so often the positive effects have to be weighed against the negative. There are only a few choices. You can ask your doc to consider another drug with less serious known side effects and see what he says. It is a big concern I know.

        As far as the CHF , I believe from what you have told me and the symptoms that you have reported, that it is the HCM that has led to the all too likely progression of the CHF. I wrote a post of this recently on the board as to the underdiagnosis and treatment of CHF in many of us with HCM. I believe that many doctors don't see it soon enough and therefore the diuretics are not brought on board soon enough and these incidents lead to acute crisis/ exacerbations of CHF.

        When one has CHF or they are in an acute flare up of fluid overload, they can have a more then usual for them, irregular heart rate. Because the added fluid is making the heart work harder and putting it under a strain, that is another reason to get care and attention early on.

        An acute exacerbation of CHF symptoms , simply means that your heart is dealing with extra fluid and it has presented your body with some very telltale swellingattern unique to each individual , discomfort , SOB, often crackles in the lungs and a cough, difficulty sleeping at night ( orthopnea), and probably a few things that I have not mentioned. When it has been gotten under control these heightened symptoms subside. You never get rid of CHF , you just manage it and you can improve remarkably and stay out of the hospital if the CHF is managed well and meticulously. Also many folks who had recent interventions will notice as Jim recently stated that it is really not a very big problem for him now. Anything that improves the function and effectiveness of the hearts ability to pump blood around the body will likewise help improve the CHF.( USUALLY)

        The CHF can be envisioned when you refer to the natural circulation of blood going in one direction and that it is not sluggish or backed up from extra fluid pounds adding to the volume of blood. The blood is flowing well and like a smooth river . Then whamoo we begin retaining fluid for various reasons; like too much salty food, getting too tired and overworking our already hyperdynamic( forcefull pumping) hearts, staying up too long when we are showing signs of swelling, then drinking a lot of fluids at that time, well geeze now we are thirsty from the salty food right? Or we have been sick and laid up with a bug or infection and not able to get up and help everything circulate. All joking aside it begins to become a problem because for normal people without HCM hearts , their bodies would take care of these issues quite readilly. Not so for some with advanced disease and now CHF.

        When fluid retention occurs , there is a release of hormones from our good little kidneys who sense we are low in fluid, (we are not) but because by now the fluid is somewhat trapped and bogging down all our tissues and organs the kidneys think we should retain more fluid because they don't see it hiding. Therefore the release of the hormones that lead to more retention of fluid compounds the already evident problem and adds to it. If we could just override that mechanism in our kidneys at the right time then many , many of us would stay out of an acute exacerbation of CHF.

        I hope this helps clarify a bit . It is a rather complex scenario of events that starts the problem and then makes it worse before we can get it back under control. However I urge everyone as I always do to be proactive , aggressive and hyper vigilant in staying in touch with this problem and learning to manage it well.

        One little added point , with the sanction of our docs who allow us to manage our diuretics when we have demonstrated knowledge and safety with the use of them them. ( sounds like a road test) We need to look at taking that extra dose before things get bad. If you are **** bent on that salty food even though your fluid is busting your seems then take the extra fluid pill before you get the chinese food in your mouth.

        This info is not directed at you Lisa but at all of us so please no one take offense to my humorous portrayal. We are all in this together.

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          Re: Amiodarone

          Lisa, I have been taking Amio for a year and a half now, the only side affect I have is sensitivety to sun light, I go regular for liver functions tests and all is OK so far.
          I believe I am luckier than a lot of people that take it, so make sure when you are that the doc are monitoring you on regular basis.
          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
          So if you are capable of thought then you are capable of great things
          Good luck and stay well.
          Glen

          Comment


          • #6
            Re: Amiodarone

            Hi Pam,

            An acute exacerbation of CHF symptoms , simply means that your heart is dealing with extra fluid and it has presented your body with some very telltale swellingattern unique to each individual , discomfort , SOB, often crackles in the lungs and a cough, difficulty sleeping at night ( orthopnea), and probably a few things that I have not mentioned.
            I know I have had this happen to me many times over the past year, this now seems to be more pronounced.

            And:
            When fluid retention occurs , there is a release of hormones from our good little kidneys who sense we are low in fluid, (we are not) but because by now the fluid is somewhat trapped and bogging down all our tissues and organs the kidneys think we should retain more fluid because they don't see it hiding. Therefore the release of the hormones that lead to more retention of fluid compounds the already evident problem and adds to it.
            (Sorry this is a bit personal)

            About this, I notice that during the early evening hours and later into the evening, before I go to sleep, I do not use the restroom very often. I drink water but I do not need to go to the bathroom. I wonder if that has anything to do with it.

            Thank you Pam for posting this very imprortant information. I really appreciate it.

            Hugs -- Eileen
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment


            • #7
              Re: Amiodarone

              My Dad has been on amiodarone for north of 20 years. When he started taking it, it was not legal in the U.S. and he got it from abroad as an experimental drug.

              It has caused permanent nerve damage to his legs so that he can now barely walk, uses a walker, fell down a few weeks ago and broke some ribs, is hypothyroid, and many other problems I am sure I have missed. Oh yeah, his skin is blue.

              They just took him off of it because the side effects were about to kill him. The damage, however, is permanent.

              Please be sure that this drug is the only thing that will work for you. There are lots of other anti-arrythmics to try first that don't have the same side effects. It is a drug that is very effective, and is also highly lethal.
              Daughter of Father with HCM
              Diagnosed with HCM 1999.
              Full term pregnancy - Son born 11/01
              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

              Comment


              • #8
                Re: Amiodarone

                Eileen,

                You are welcome.

                In regards to the night time fluid expulsion( urination), it is not unusual for this pattern to occur. In fact it is better to get the excess fluid out during the day then at night when you need to be recumbent and resting well. If you are still holding a bulk of fluid at nightfall then you need to consider putting your diuretic in the morning at a higher doseage. If the particular diuretic or the doseage is working effectively you should need to be near the facilities for several hours ( about 2-3 hours) in the AM. It should then back off and be more normal. The peak effectiveness for specific diuretics dictates this pattern. Most urologists stand by the fact that a good /hefty dose in the AM will afford the greatest impact on fluid control. As the day progresses we need to support that by watching the salt and processed foods that are loaded with salt , drinking enough clear liquids that will keep are hydration adequate for our HCM hearts and knowing when we need to recline and get those feet up to help the kidneys do their normal job of filtering and pushing fluid out. You should notice relief of symptoms and feel a little dry as afternoon and evening set in .

                In some cases it is necessary to add dosing in the afternoon as well. When I used to take 120mgs to 160mgs of Lasix per day , I took the biggest dose in the AM, like 80 mgs @ 7-8 am & 40mgs @ 4-5 PM. For the higher it was 100mgs AM , 60mgs PM. This was effective for me . Now with this, I also had to be extremely carefull with what I put in my mouth, you know what I mean? That my dear was a 24/7 day project. See why you need a myectomy or some sort of intervention. This whole thing very much improves when there is a successfull intervention, as then the heart is much better at doing its job , henceforth so are the kidneys , the liver , the brain, etc, etc. .

                Good luck and hope these pointers help. Oh one more thing. How do we tell if the fluid is coming off appropriately? You got it ... a very efficient scale and a measuring tape and a pencil and paper to write it in our fluid journals.

                Be well,

                Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Re: Amiodarone

                  (I'm sorry Labbey, I did not mean to take over your thread.)

                  Pam,

                  I am not on a diuretic yet --

                  The doctor never prescribed one for me when we talked about this over the phone. I need to call her on Monday to get a prescription. The cardiologist seems to think that this is more of an annoyance than anything else. She keep saying that these are normal symptoms for my condition and then she says that I have CHF and I need to watch my salt intake.

                  I'm confused. I told her all the symptoms I am having especially at night. Everynight I suffer with terrible SOB with any movement and bloating and fatigue and having to sit up... not to mention all the heart palps and PVCs.

                  Thank you again Pam, I will refere to this post when I finally get my diuretic.

                  And again, sorry Labbey. Next time I'll start my own thread.

                  Hugs -- Eileen
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    Re: Amiodarone

                    My mom has been on amiodarone for about 20 years too but she is fine except that her liver started to have a few problems and they decreased her dose and it is ok now. her skin is just beginning to turn a bit blue in places.

                    You should visit http://amiodarone.drugs.com/ to read up on all the side effects.

                    If amio is the only thing that works for you, then you need to weigh the risks of afib vs. the risks of amio. there is also a 2% chance of going blind on it.

                    Ask your doctor about dofetilide (Tikosyn), a relative of amio that is newer and has waaaay fewer side effects. It does, however, have to be taken EXACTLY on time and never miss or double dose as it can cause problems. I accidently double dosed and my heart rate went down to 40 and they kept me hooked up to a defibrillator all night just in case. They didn't have to use it but you never know.

                    The problem with every medication that changes your heart beat (and this is true for all of them to one degree or another), is that it can change it for good or for bad. No way to know which it will be. Truly.

                    Sorry this post isn't exactly cheerful, just truthful.

                    Good luck and know you aren't alone.

                    Sarah

                    Comment


                    • #11
                      Re: Amiodarone

                      I was on Amiodarone, but I had a terrible reaction to it. I broke out in a really bad rash head to toe. Found out I'm allergic to it. My Dr. has cut my meds. way back. Now i'm only on Lopressor, 100 mlg per day...


                      Tigger1
                      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                      Comment


                      • #12
                        Re: Amiodarone

                        Hi again, and thank you so much for the helpful information. It is so appreciated.
                        Eileen, my goodness don't worry about the "thread" I think it is fine. If others can gather information from my question, (because I have a lot of them!), then that is even better!!!! Thank you..

                        Sarah, thank you for your input. It helps, cheery or not people need to know. I know I have been a lot of other antiarrythmia drugs and they caused bad problems, Defribillator going off because of vtach and v fib. so I am suspecting that is why I am taking the amiadarone. Another doctor that deals with my pacer/icd, suggested dyspomyride, (this is probably a bad guess at the spelling and the name) I will look up the one drug you mentioned. Now I have to go back and look but thanks for the suggestion!!!! I know it began with a T!

                        Pam. thank you so much for your complete description of CHF. It was in language I can understand. You are sweet, I will email you later!!!
                        diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

                        Comment


                        • #13
                          Re: Amiodarone

                          Disopyramide phosophate is the generic for Norpace. It is a potassium channel blocker like dofetilide and amiodarone. I was on it for ten years and the only trouble I had was occaisional dry mouth and "frequent urination" that I can't necessarily pin on the norpace since I had to drink a lot of water due to kidney stones.

                          Disopyramide and dofetilide both require hospital stays to start taking them --I think amio should or is supposed to be but not required. not sure there.

                          anyway, norpace is a good place to start.

                          take care,

                          s

                          Comment


                          • #14
                            Re: Amiodarone

                            I did not require a hospital stay when I started Amio, I did go thru a loading process and then had to be tested right after that and then once a month for about 6 months and now I'm suppose to have a liver test every 3 months.
                            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                            So if you are capable of thought then you are capable of great things
                            Good luck and stay well.
                            Glen

                            Comment


                            • #15
                              Re: Amiodarone

                              Hi Everyone,
                              Thanks again for the informative responses. Just wanted to fill you in on what I was told yesterday by my regular cardiologist partner.

                              I suggested going on Norpace or Tykosin, instead of amiadarone because I was worried about all the brutal side effects. He said those wouldn't work for me because they are great for A fib, but since I have v tach and a fib, I need a drug that will work on both of these parts of the heart.

                              SO no luck in changing anything. I did change back to Toprol Xl instead of Lopressor. I felt the Lopressor did nothing. MY heart was beating very very hard. More like a pounding, I am sure you all get what I mean.

                              This cardiologist said he did a study on amiadarone in New York City, and he feels it is the best drug for me and all my stuff. He says those side effects can occur, but rarely do. He was really stern on that amiadarone was the best for me. Even though I am only 38. I said I am worried about being on it for a lot of years. He said I will get tested for the lungs and liver and etc. If anything is happening and is caught early, they can fix it.

                              He agrees with my regular cardiologist prediction of needing a heart transplant one day. I don't know how I feel about this. But that is 2 cardiologist who have said that....

                              Shirley and Beverly,
                              I am feeling for you! Good luck in everything. I am sure this is scary...
                              Thinking of you both....
                              So what does anybody think of what I was told, anyone ever hear of this type of explanation?
                              thanks,
                              lisa a.
                              diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X