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  • NorpaceCR shortage?

    Does anyone have any news on the Norpace CR shortage? I got a phone message from my pharmacy they they have called my MD for a substitute, but of course it was too late for me to call either the pharmacy or my doctor, so now I'm wondering if I will be waking up at 1 am for meds until this problem is resolved?

  • #2
    Re: NorpaceCR shortage?

    Wow, that's a bummer.....I flushed a whole bottle last month after my myectomy!!! If I would have known I
    Could have saved it for you! It seems at least here in Denver when I was on it there was a time delay and some sort of Underground Railroad for emergencies......My hospital went across the street to a different hospital and bought a supply for my in hospital trial. You might try calling Pfizer directly OR talking to your hospital pharmacy and finding out who their Pfizer Pharmaceutical rep is......I never looked, but I wonder if Canada has a generic version?
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Re: NorpaceCR shortage?

      Hopefully my doctor will have some answers, in the meantime the FDA is listing the long acting, as a drug experiencing a shortage, but the generic, which isn't long acting is available. So I may be taking my meds 4 times a day till it's available

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      • #4
        Re: NorpaceCR shortage?

        I remember my cardiologist asking me if I wanted to take the generic 4 times a day for a $10.00 co-pay per month or the Norpace CR brand name twice a day for a $45.00 co- pay....I chose the CR....sometimes convenience is worth the extra bucks. Hope you find some soon. It seems this happens on and off....I saw a thread from 2009 where someone said the CR was going to be discontinued altogether.
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

        Comment


        • #5
          Re: NorpaceCR shortage?

          I'm so happy to report that I was able to get Norpace CR 100 at Arrow Pharmacy on 9th ave. The thought of getting up in the middle of the night to medicate myself was giving me palpitations!

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          • #6
            Re: NorpaceCR shortage?

            Glad to hear it!!! You certainly don't need any more palpitations than HCM already gives you.
            At least 5 years of symptoms.
            07/24/14: Age 45, diagnosed with HCM w/ obstruction.
            09/30/14: Tested at Cleveland Clinic (Ohio).
            January 2015: Approved for surgery.
            03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

            Comment


            • #7
              Re: NorpaceCR shortage?

              Just wanted to say thank you -- couldn't find it anyplace -- called Arrow and bingo - thanks for the tip!

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              • #8
                Any information on a substitute medication for Norpace cr. Taking 150 mg 3 times per day but not really feeling great.

                Comment


                • #9
                  Hi Joyce,
                  I see this is your first post.... But you've been with us since 2005..Wow. Be sure to go to the Hello my name is section and tell us about your journey. In regards to your question about Norpace....I can't say that I know of a " substitute medication for Norpace. Norpace is very unique. It was originally used as an anti arrhythmic agent years ago.....it has now been surpassed by other drugs that control arrhythmias better. HOWEVER, it has a unique role in HCM.....particularly HCM with obstruction because in many cases it can actually reduce obstruction and it's subsequent symptoms.
                  I'm not sure from what you said if you are not feeling well do to side effects or if you are not feeling well in that you are not getting symptom relief from the drug.
                  In General, in HCM with documented significant obstruction, cardiologists will try, beta blockers, calcium channel blockers and then Norpace as a final effort to control symptoms....if no drug combinations are working, then a consult for septal reduction may be considered.
                  I'm hoping you are currently under the advice of an HCM center of excellence....if you aren'T it is something you should seriously consider to get the best and most up to date treatment protocols.
                  Keep us posted
                  After years of symptoms:
                  Officially Diagnosed HOCM 2006
                  Myectomy 3/11/13 at non-COE
                  Extended Myectomy 7/23/14
                  At Mayo with Dr. Joseph Dearani

                  Comment


                  • #10
                    Thanks for your response. I have been evaluated over the last 10 years in Boston at New England medical. I live in Philadelphia and my cardiologist here has been more than willing to follow the recommendations of dr. Maron's (?) team. I have been largely a symptomatic until recently tied , I believe, to,the change in my medication. I haven't been to New England in a couple of years and I am going to get up there, if possible, before the end of the year. My cardiologist is at the university of,pennsylvania hospital, but they are not a HCM center f excellence to my knowledge.
                    Again thanks for your time and reply. I will consider going to,the section of website and give my story. I,do,find this,site very informative.

                    Comment


                    • #11
                      Joyce, Please take a look at the list of COEs on this site....there are several in the New England area and it would be a good idea to hook up with a COE and then have them work with your local cardiologist as your condition changes. There really is a difference.
                      Keep us posted
                      After years of symptoms:
                      Officially Diagnosed HOCM 2006
                      Myectomy 3/11/13 at non-COE
                      Extended Myectomy 7/23/14
                      At Mayo with Dr. Joseph Dearani

                      Comment


                      • #12
                        Hi Joyce,
                        I think that your idea about seeing Dr. Maron again is a great one. I hope you can do it soon!
                        Gordon
                        Myectomy on Feb. 5, 2007.

                        Comment


                        • #13
                          I was diagnosed at Mayo Clinic Rochester with obstructive HCM and Mital Valve Regurgitation in 2013. For the past 5 Yrs I have been on Atenenol. I had an echo each year by my cardiologist and was advised all was ok. However I recent EKG in Dec 2017 indicated strong mitral valve issue. I decided to go back to Mayo and be re tested however my insurance would not pay (I have changed ins since
                          diagnosis ) I also learned there is a HCM Clinic in Nashville TN (cornered by my insurance) I have had another Echo and MRI and am scheduled for a bicycle stress in order to compare test from 2013. The thickness has increased by 2cm and the mitral valve issue is much stronger.
                          my doctor recommends I have an angiogram to see if there are other issues (my thickness is center left ) and while I am in the hospital he would like me to be placed on Norpace for a three day in hospital trial.. based on research the side effects appear to be substantial. Can anyone pride their experience with this drug? Thank you!!

                          Comment


                          • #14
                            Hi Gail,
                            Here is the little bit I know about Norpace ( Disopyramide). Norpace is not a first line drug in HCM in general because it can be more complex to start and manage. It is reserved for HCM with symptomatic obstruction demonstrated on echo cardiogram or a stress echo that is NOT responding to traditional beta blockers or calcium channel blockers. Most common clinical side effects are dry mouth and urinary hesitancy or urinary retention. Many centers in the US start Disopyramide in the hospital ..... in Canada and Europe that is not as common. When I was started on it in the hospital I was there for about 36 - 48hrsI think.... they gradually increased my dose of the drug and took a 12 lead ekg after each dose ....I was also on continuous cardiac monitoring....and encouraged to be active. Disopyramide or Norpace can prolong the QT interval on your EKG...... if this interval gets too long it can start a very dangerous rapid ventricular heart rhythm that is difficult to convert to normal. Once you have shown that your QT interval is wthin normal limits at the dose your going to be prescribed you can leave and the danger of that arrhythmia occurring is minuscule.
                            Sooooo why take it? In my experience, this drug relieved approximately 90% of my HOCM symptoms....chest pain stopped, exercise tolerance increased, sob was much less....HOWEVER, in my particular case, this only lasted for 4 weeks....I do know people who have taken it for up to 8 years with great success during that whole time. Each case is individual and I'm not sure from your post what symptoms you have, whether you have outflow tract obstruction, how much of our current symptoms are caused by HCM, by obstruction, or by Mitral valve problems. Medication is only a small part of the whole picture.
                            Are you at an HCM Center of Excellence? ( there is a list on the HCMA homepage) or just a place that calls themselves an HCM clinic....there can be quite a difference.
                            I think you might really benefit by calling the HCMA office and getting input on your particular case and how to evaluate the quality of The recommendations you are getting.
                            Last edited by JillC; 03-03-2018, 01:25 AM.
                            After years of symptoms:
                            Officially Diagnosed HOCM 2006
                            Myectomy 3/11/13 at non-COE
                            Extended Myectomy 7/23/14
                            At Mayo with Dr. Joseph Dearani

                            Comment

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