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Statins , Lipid Clinics and Yellow cards

Posted , 5 users are following.

jura13
jura13

I have been taking Statins for 25 years. My level at that time was 14.8. I have suffered aches for at least 20 of these years. Last year my cholesterol level was 4.5. Then for some reason 5 years ago the excruciating pains started in my, shoulders, neck, arms and back. Often very strong painkillers won't even dull the pain.

I have insisted on trying different statins, all 4 types. The result is the same. Last December i took myself off statins for a month. Result - 3 weeks of pain-free heaven with the power beginning to return to the muscles too.

My cholesterol level after this was 10.8 so I decided to return to statins. Ouch!

Will GPS accept that the pain is due to the Statins - no!

It is a battle. I have finally persuaded him to refer me to a Lipid clinic. Never been told about them by anyone. I don't know what they do and if someone there is more advanced in their knowledge. I go next month.

I have also filled in a "yellow card" that the NHS produces to accept YOUR information about the side effects of medication. This can be Googled easily.

Something needs to be done and it appears it's up to the patients to get the GPS etc to listen.

1 like, 7 replies

7 Replies

  • EileenH
    EileenH jura13

    Posted

    Have you tried cutting carbohydrates drastically? That is also a recognised way of reducing cholesterol though whether it works for congenital hypercholesterolaemia I don't know. I know it sounds crackers but the biochemistry does work...
    • jura13
      jura13 EileenH

      Posted

      I've tried all dietary methods but unfortunately it is familial HP and probably also associated with an under-active thyroid. My daughter was diagnosed with both at a slightly younger age than I was, 29.
    • EileenH
      EileenH jura13

      Posted

      Yes, I assumed you had the familial version. I've come across people where cutting fats didn't work - unlikely to since you body makes the cholesterol - but where cutting carbs to almost zero did. I assume though that in familial HP that may not work.

      Wouldn't it be nice if they could develop a drug that does it without nasty side effects - there's niacin of course but it isn't always friendly either. 

      Do hope you find a solution - I have polymyalgia rheumatica, means taking prednisolone but at least it leaves me pretty much pain-free. The thought of spending the rest of my life hurting as I did with it is really not nice - and when they tried to get me to take a statin it was far worse, plus I couldn't walk for more than 5 minutes and even 50 yards up a slope left me gasping for breath. 

  • derek76
    derek76 jura13

    Posted

    I would imagine that a Lipid clinic would be very pro Statin.
  • lorna84612
    lorna84612 jura13

    Posted

    I have been on and off statins for the last 14 years as my chlorestral levels rise dramatically when off them. I get dreadful muscle pain and have been left with numbness and tingling in my arms. The muscle pain does go when off them. I take good care with my diet, exercise every day by walking a lot, am not overweight but still have high chlorestral. I have had a heart attack and on medications for my heart, also under active thyroid,2 knee replacements, so have a few health problems. Will try the CO10 to see if that helps with the statins. I have a good Doctor who does listen but does not know what else to do to help.
    • jura13
      jura13 lorna84612

      Posted

      Hi Lorna, try to get your GP to refer you to a Lipid clinic at your main hospital. My GP stated that he "had never sent a patient to a Lipid Clinic. So after reading about them on the Internet I insisted he refer me. THEY accepted the side effects of Statins and are working with me in trying different medication.

      I felt someone was finally truly listening. Even if it doesn't work brilliantly I know they will continue. It's their area of expertise.

      An under-active thyroid and high cholesterol tend to go hand in hand especially with early onset. Familial high cholesterol is not the same as eating the wrong foods.

      Good luck Lorna.

    • lorna84612
      lorna84612 jura13

      Posted

      Thanks Jura,will speak to my Doctor. I have been on every statin over the last 13 years and have had the same reactions but will go on to find  out about Lipid clinic. I also have an under active thyroid. Thanks again.
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