Little improvements!

So I've been taking rosuvastatin g for 3 months now despite the muscle pain/crazy dreams/aching arms shoulders and respected cramps and have just had my bloods tested again. Total chol gone down from 6.7 to 5.3, hdl gone up from 1.68 to 1.89 (highest it's ever been) and lol reduced from4.68 to 3.07. Not where they need me to be and certainly not where I want to be with treatment but I'm figuring this is a long road. Blood test done to see if any sign of muscle damage and will get results today. If not switching to atorvastatin - see FH specialist again in approx 8 mths so before then I want to say I've tried x,y & z but now I want praluent!!!!!!!!! It's a battle I'm hoping to win!

16 Replies

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  • What natural means did you try first to reduce your Cholesterol. Have you considered the increase risk of Dementia and Type 2 Diabetes due to taking Statins ?.

  • I tried drastic diet changes (no processed foods no refined sugar or white flour, reduced fruit, increased good fat like almond butters, avocado, coconut oils) and running for exercise but it made zero difference to my ldl or overall chol reading. I have FH and was told this would be the case - I had tried these changes prior to being diagnosed but when I knew my chol was elevated. I really don't want to take statins but with 2 young kids I felt it was my duty to them to try something in the intermin. I'm really hoping to move over to praluent as I absolutely do not want to take statins for the rest of my life. I'm also scared because my 8 year old beautiful daughter has just been diagnosed and it's a worry she should not have to deal with. I haven't told her yet . There's a lot to be said for finding out at 41!

  • And have you stayed with these 'drastic' changes Lyne ?

  • No I didn't although I still have a "healthy" diet and am still active. I just became so disheartened when I was told that because of my FH diagnosis diet will have no impact on my numbers! The mutation is with the gene that effects my LDL levels. I didn't even know what that was but I believe this should be <3.0 and mine was 4.68. Before finding all this out I was aware that I had a higher than avg chol level and I'd known that for years but never experienced any symptoms of heart disease etc. I am trusting what I am being told by specialists, that I need to get my numbers down. I am concerned by how statins are making me feel but I feel stuck.

  • First of all the changes you made to your diet would have lowered your risk of oxidised LDL. This is something I would be far more concerned about than an LDL above 4.0. Secondly I would want to know whether, with your numbers, I actually was developing heart disease because if you are not then why would you start taking a statin. You could get a Lp-PLA2 test which gives an indication of the amount of inflamed plaque in your arteries based on the secretion of an enzyme. You could also try a Cardio scan which I admit involves radiation but will also give you a score for plaque. Get back to eating the way you did, not because it impacts these numbers, but because it lowers your overall risk.

  • How do I get these 2 tests in uk? I had looked up a calcium score test before as I read this would be indicator of any Plaque build up to date? And my other question is how to I interpret the results of these tests myself if I have done them privately without a specialist? I really appreciate all your thoughts!

  • The Lp-PLA2 blood test is done by Blue Horizons see

    bluehorizonmedicals.co.uk/L...

    Some information on Coronary Calcium scoring here

    patient.info/doctor/coronar...

    Here is one venue that provides it Calcium scoring although shop around for yourself

    rivershospital.co.uk/treatm...

  • Really? No effect? I have FH and I couldn't get my levels down low enough, but I found oat bran (55g each morning) and Benecol (one bottle each evening as close to dinner as possible) made measurable differences. Other things from HEART UK's Universal Cholesterol Lowering Plan made smaller hard-to-be-sure differences and exercise (just 30+ mins six times a week) reduced it by 15-20%.

    I did have one downwards blip which I never figured out the cause - I'd love to know, so I could keep on doing it!

  • Hello lynsreid, Who told you that 5.5 was high? How do they know what is correct for you? Neither your doctor nor anyone else knows what you cholesterol level ought to be; cholesterol is an important component of the blood acting as a repair mechanism on the site of any injury. Rather than go into a long description I would recommend that you read what a heart surgeon says when he admits to having been wrong over 25 years. Go to: healthscams.org.uk/heart-su...

    No matter what anyone tells you saturated fats are a vital part of your nutrition, stay away from all seed oils and butter substitutes, watch out for added sugar and certainly don't go for "diet" products.

    Lastly avoid Statins. They've been a winner for the pharmaceutical industry but caused a lot of pain and suffering to the public. You will find an article about them on the same site as the heart surgeon article.

    Best of luck, enjoy life that's what it's for! Tibbly

  • That link doesn't work for me but I read one of your posts on another thread. I think it was the same one. It's very worrying with such contradictory advice out there! I'm more concerned for my daughter, getting her on the right footing, but she still needs to have a fun normal childhood

  • There are lots of extremists on both sides. I suspct the truth is somewhere between them, but it's hard to figure out where.

  • Oh and how much risk are you at? I had no choice but to face it as a child because of a parent's heart attack and it's hard but even then, with all the short-term worry about whether they would live or die, I now think I was better off learning about the illness, being able to talk to other sufferers (my relatives) whenever I wanted and facing up to my own mortality while I was still in a fairly safe and supportive childhood home, rather than it being yet another thing to deal with when I was leaving home and trying to figure out what I was doing with my life.

    The main abnormality it's left me with is a very very dark sense of humour. Like the song says "I'm the kind of guy who laughs at a funeral - can't understand what I mean? Well, you soon will."

  • Thanks. Great comments. Appreciated.

  • A small word of warning: if you get your levels down with other treatments, most NHS funders will declare you ineligible for Praluent. Now, that can be a bad thing if you're having lots of problems with statins (and I flaming well don't care whether the blood test results show muscle damage - if I'm in pain that brings me to tears, I'm not taking them - I've done my time with the memory of a goldfish and disturbed sleep and I will not go through that again), or it could be a good thing if you can get it low enough with absorption inhibitors and bile acid sequestrants.

    I know lots of us with FH are looking at Praluent and Repatha optimistically, but I was diagnosed decades ago when statins were first becoming widespread as the new wonder drug which doctors were then saying had no side effects, so I'm sceptical and not rushing to be among the first blazing that trail.

  • I just want to be off statins, they are making me feel old and unhealthy!!!!!!!!!!!!!

  • Discuss trying other treatment options with your doctor, then. See if they will fund Praluent, or if you can stomach (literally, sadly!) the older treatments like sequestrants which make you poo out bile acids that the body is then forced to replace by stepping up cholesterol recovery from the blood. en.wikipedia.org/wiki/Coles...

    You really really need to make sure you're getting enough dietary fibre when taking that... and they may suggest taking ezetimibe too.

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