Mended Hearts Open Forum

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  • 1.  Success

    Posted 02-05-2018 10:42
    After only one month on Repatha (PCSK9 inhibitor) my LDL is down to 70!! I am beyond excited! The fight to get this drug approved was definitely worth it!!

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  • 2.  RE: Success

    Posted 02-06-2018 10:22
    For me being on Praluent injections eliminated those aching leg pains from statins. And of course my cholesterol and all other levels went down too.

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  • 3.  RE: Success

    Posted 02-07-2018 18:35
    Have had 1st 2 injections last month. Did anyone else find it caused constant need for tissues all day, night, or just me?

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  • 4.  RE: Success

    Posted 02-08-2018 10:14
    I constantly have a runny nose but can’t be sure it’s from the injections, other meds or simply sinuses. Have you read the info that comes in the package?

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  • 5.  RE: Success

    Posted 02-09-2018 15:45
    Brochure does mention runny noses. It greatly increased from just my Lipitor pills. Did you have that w regular cholesterol pills also?

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  • 6.  RE: Success

    Posted 02-10-2018 11:09
    What side effects,if any, do you get from the injections?

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  • 7.  RE: Success

    Posted 02-11-2018 13:09


    I have not had any side affects from the Rapatha nor from the Pralulent  when I was taking that. It is great.

    My wife does not like the thought of the needle, but it is almost painless when I do it right. I learned early to not move the pen around after I press the button. ��)

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  • 8.  RE: Success

    Posted 02-11-2018 21:17
    I have had no side effects so far! I live in the South so allergies and a runny nose are a way of life for everyone! Even if I have to hang a bucket under my nose it is so worth it to have my cholesterol finally under control! Hang in there and thank you for sharing.

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  • 9.  RE: Success

    Posted 02-12-2018 10:12
    What are the reasons that Some of you have switched from Praluent to Repatha?

  • 10.  RE: Success

    Posted 02-13-2018 10:53


    My Insurance company chose for me.

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  • 11.  RE: Success

    Posted 02-12-2018 10:13
    Is anyone experiencing bad dreams as I seem to be?

  • 12.  RE: Success

    Posted 02-13-2018 03:40
    Bad dreams can be caused by drugs.  That has happened to me.

    Francee Levin
    Columbia SC
    (803) 788-1207

  • 13.  RE: Success

    Posted 02-09-2018 22:28
    No, I have not had a runny nose nor any other side effects. I got so bad while on statins I couldn’t get out of a chair without help! This is so much better and it actually works!

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  • 14.  RE: Success

    Posted 02-07-2018 18:37
    How low ldl cholesterol is too low? Our bodies need some, I think.

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  • 15.  RE: Success

    Posted 02-07-2018 09:02

    This makes me SO HAPPY!!! YAY!!! Congrats on the amazing results and thank you for fighting for all heart patients to get the meds that they need!

    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    Director of Patient Advocacy

  • 16.  RE: Success

    Posted 02-10-2018 11:14
    ​I have been on Rapatha for over a year now. I was on Pralulent prior to that for 3 months. Both worked wonders. Like all of you the statins caused me pain and I only had marginal results. I also have had an increase in my nose running, but I have a history of minor hay fever and sinusitis. The Rapatha may simply be adding to the minor nasal drainage I all ready had. If so, I do not care as my cholesterol if finally under control and my doc and I are very happy about itl

    Richard Short
    Barstow CA


  • 17.  RE: Success

    Posted 02-11-2018 08:31
    Hello all

    I have been trying to get on repatha or Pralulent. For quite some time now and insurance won’t allow it. I can not stand the statins as I get very sore and loss of muscle. My hips hurt a lot as well when I stayed off them due to side effects my LDL went to 180. How did you manage to win the fight and get approved. I had dbl by pass and aortic valve replaced in 2012.also ICD,pacemaker.

    Thank you
    Bob P.

    Mended hearts Morristown, NJ

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  • 18.  RE: Success

    Posted 02-12-2018 10:57
    Praluent or repatha approval depends on which insurance company you have. They dont all approve it. After Medicare my insurance is a Blue Cross PPO, through the entertainment industry. I’m very fortunate to have it.

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  • 19.  RE: Success

    Posted 02-13-2018 06:16

    According to my doctors office they have been calling insurance company. They tell me that I need to fail another trial and I am not on the Lipitor generic brand. They just increased it to 20 mg daily, about 8 years ago while on a high dose statin I almost drowned due to what I felt was loss of muscle and couldn’t swim anymore. I was always a strong swimmer.
    Been on this statin over 2 months now and starting to feel no good again, any advice here on what I can do or what you did to get approval?


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  • 20.  RE: Success

    Posted 02-12-2018 19:53

    I had a long history of failure on the statins. Then I was on Niacin and Zetia for several years. I felt better on those but they were not as effective. That was all before my CABG. After the CABG my doctor gave me Pralulent from samples the durg reps provided. My insurance claim was denied as well, but because of my history my insurance said they would approve Rapatha. That was on a trail period of about 9 months and my doctor again provide lab results showing the progress. That was the way I got approved. The staff at the doctors office did a great job pushing my paperwork thru at least 3 times prior to the 9 month trial. My insurance company wanted proof of the history of failure on the other drugs before they would finally approve the Rapatha. Keep at it, persistence was key for me.





    ent from Mail for Windows 10


  • 21.  RE: Success

    Posted 02-13-2018 18:42
    To counteract muscle, shoulder aches I use Co Q 10 at night w cholesterol medicine. Take magnesium in morning, potassium at night. Take glucosamine sulfate in day. It helps aches a lot. Also asked cardiologist if II could reduce amount of cholesterol medicine slightly , bc. LDL number fairly decent and more made me too tired. Lipitor works well, was my 5th try. Now I will be adding Repatha.

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