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.

NORPACE anyone?

Collapse

About the Author

Collapse

Cynaburst Find out more about Cynaburst
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • NORPACE anyone?

    I will be starting this medicine with my atenolol in a week or so, and I am wondering if the people who are on it can share their experiences.

    Any side effects? Did they improve, if you had them? Did it improve your gradient.

    All comments are appreciated.
    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.

  • #2
    Cynthia ,

    Sorry no one has responded yet. I have no information or personal experience with this one to benefit you. I hope someone gives you feed back soon.

    Best to you, 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


    • #3
      Cynaburst, I'm sorry that I don't have anything to add either. The strongest med we've had here is atenolol.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        ten years of norpace

        Hi

        I took Norpace for ten years and tolerated it very well. Dry mouth and having to go to the bathroom probably a little more often than before are all that I had as side effects.

        I only went off of it because I tried to get weened off of all my medications and that didn't work very well and when they tried to put me back on it, it didn't keep me in sinus rhythm any more (I kept going into afib).

        My brother took it too, and he just complained of dry mouth, but I think they have lozenges now that work really well.

        S

        Comment


        • #5
          I was on Norpace CR, 150 mg., twice a day for about a 8 months. I experienced a very dry mouth and had minor relief in arrhythmia and in chest pain.
          I then went to 300 mg. twice a day, for about a year. I experienced an even drier mouth, a little difficulty in urination, some constipation and got some further relief both in arrhythmia and in chest pain. I was told that this was the optimal maximum dosage for HOCM with mid-cavity obstruction.
          This was then changed to 250 mg twice a day, of Rythmodan LA, (generically identical to Norpace CR), when Norpace became unavailable in Canada. The change in dosage this time was only due to practicality: it was the closest dosage available in the long acting form of Rythmodan.
          The adverse side effects are now rarely noticeable and the arrhythmia is being held in check most of the time.

          Some things to take note of:
          The long acting form (CR or LA) is preferable as a consistent dose is more effective. I was even told to set an alarm if necessary to make sure it was taken exactly at every 12 hour intervals.
          If you have any symptoms, especially urine retention or constipation, you should tell your GP so they can be managed.
          Some new antibiotics in the fluoroquinolones class, such as Levaquin (levofloxacin) are contraindicated along with drugs such as NORPACE, quinidine (Cardioquin, Quinidex, Quinaglute), procainamide (Pronestyl, Procan SR), amiodarone (Cordarone, Pacerone), sotalol (Betapace), and others, as they can affect the prolongation of the QT interval.
          I had to be weaned off of Norpace in order to take Levaquin, and then re-introduced to Norpace. Like Sarah, I found that the Norpace was not as effective when I restarted it, but eventually I was able to tolerate it again.
          In Canada, unlike the USA, patients are not hospitalized when starting Norpace.
          I hope this helps you.

          Comment


          • #6
            CR vs. regular

            Oh yes, I was on the CR (continuous release) formula and I would recommend that over the regular one any day.

            We were also increasing my dose over the years. I never found constipation to be a problem.

            You do need to make sure you are taking your pills on time. Norpace is a potassium-channel blocker and thus stronger than beta-blockers (amiodarone and dofetilide are also p-channel blockers).

            S

            Comment


            • #7
              Yes, the side effects that scare me are the ones having to do with going potty. Neither of these two problems are fun.

              In fact, following my brain surgery a few years ago I had a problem when I was in the hospital of being unable to urinate, even though I was quite full. It was frankly terrifying, and they had to put a catheter back in me and they took me off of all of the medicines that I was on (which was quite a cocktail at the time) and I have been fine since, but I am glad that I am going to the hospital to start the Norpace in case anything dreadful happens.

              Thanks Sarah and BigHeart for your advice.
              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
                Norpace - so far so good.

                Cynaburst
                I began Norpace CR 250 mg 2x a day just last Tuseday 2/15.

                Norpace for me so far is a real winner. We did a "Before" echocardiogram, with the techs knowing exactly what they were looking to measure and pay attention to. I then had my first Norpace, 250 milligrams, Tuseday night and the same again the next morning.
                Wednesday afternoon I had the second "after" echo - just a brief study to look at the presuure gradient resting, after standing and after vaslava (you know, that thing were you hold your breath and bear down).

                The results for me appear to be quite good.

                My gradient before was 58 mm Hg resting, 100 mm Hg after valsava and standing.
                My gradient after the first two courses of Norpace was 14 mm Hg after both resting and valsava.

                I do get a little bit of dry mouth, especailly when I wake up in the morning or in the middle of the night. But I keep a bottle of water by the bed and I am good to go. Dry mouth is less noticable during the day but I have always carried water around, especially when I excercise. It is no deal breaker. My doctor's HCM nurse tells me that there are prescriptions available to counteract severe dry-mouth but I will not need that.
                I was afraid of having trouble urinating, as it happened sometimes to me before, but no problems AT ALL on Norpace. If anything, a bit more frequently but nothing alarming and certainly not uncontrolable.
                I cannot tell if I am photosensitive as I left immediately from NY to "sunny" southern California on businss and have had nothing but clouds and rain. What's up with that?

                I had my first real life test on Saturday as my plane from NY pulled into Chicago late for my connection to San Diego. At the last minute they switched arrival gates from that which was a few feet from my departure gate to an entire different concourse. I sprinted off the plane and ran UP (that's the operative word) the jetway and down the long concourse. I missed the connection but it was still a victory; I would not normally have been able to go from sitting to running uphill without getting symptomatic (shortness of breath, dizzy, pain etc.).

                The bigger tests for me will be back at home when I walk up certain streets and certain hallways and certain subway stops (all uphill) that I know would always be tough for me (gasping, clutching, resting). It will be like a controlled experiment, since I know exactly what happened before at certain times of day and will be able to judge now that I am post Norpace. The hotel I am in now is on a flat island (no hills) and is all single story buildings (no stairs). So I cannot "test" here.

                I still take Atenolol 100 mg 1 x a day (a beta blocker) for hypertension, and that has also had a mitigating effect on my HCM symptoms over time.
                I'm 45 and I have HCM with latent Obstruction. Thickest wall section is 20 mm.
                Angus Campbell
                Golden Isles Region, Southeast Georgia, USA

                Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                Myectomy Jan 9th 2014 at Cleveland Clinic
                Drs Lever and Smedira

                Comment


                • #9
                  norpace & potty

                  i've been on a beta blocker of one brand or another for over 20 years and since i'm little with normal blood pressure, i've always had to drink a lot, so even though i'm not on norpace, i'm still using the facilities probably double the frequency of anyone i know.

                  i never had any real back end trouble, thank goodness.

                  for a hilarious (and well written) diatribe on constipation, check out http://www.dooce.com/archives/poop/index.html

                  Comment


                  • #10
                    Now Sarah that was funny, i read a few of them

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      she's great

                      i know. i love that blog! she is the erma bombeck of this generation.

                      Comment


                      • #12
                        Update on Norpace

                        I had been scheduled for a 60 day follow up in May with Dr Sherrid, but went back yesterday due to the recurrence of symptoms. While at first after starting Norpace I would only get occasional angina symptoms towards the end of a 12- hour dosage cycle, in the last couple of weeks I started getting it just hours after a dose and long before the next. The symptoms are not consistent but often enough to be troubling.

                        So now we are adding 50 mg of Atenolol at night in addition to the 100 mg in the morning (originally for hypertension). If that does not work after a week, I'll go to 300mg 2X a day of Norpace from 250 mg.

                        We'll see...
                        Angus Campbell
                        Golden Isles Region, Southeast Georgia, USA

                        Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                        Myectomy Jan 9th 2014 at Cleveland Clinic
                        Drs Lever and Smedira

                        Comment

                        Working...
                        X