People taking statins may be reassured that any side effects they are experiencing are all in their imagination:
telegraph.co.uk/health/heal...
That's all right then, and the comments that follow can be put down to the side effects of a placebo!
Statin Reassurance. : People taking... - Cholesterol Support
Statin Reassurance.
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MikePollard
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This of course is based on 29 drug trials and we know how unrelated this is to the real world. As Dr Malhotra says it's an insult to patients who have had side effects and the few who have had lfe threatening rhabdo whatever it's called.
Hopefully nobody takes this sort of report seriously....oh no maybe they do.
Rhabdomyolysis, where the products of muscle breakdown shut down the kidneys
Read the actual analysis: badscience.net/2014/03/stat...
You will see yes, data does suggest that statins don't have side effects but as usual it is appropriate to understand the caveats that apply to the conclusion, which are clearly expressed in the link.
Honestly, half of the commentary in this forum would benefit from a critical analysis of the data it is based on. I think if it were, we would read less quackery and this forum would be a less negative place.
'Statins do NOT have major side effects, claims study': I just caught up with this gem in the Daily Mail and could barely believe what I was reading!! Apparently all it can cause is diabetes according to researchers at Imperial College. That alone is a good enough reason not to take them I would have thought ? What an insult to all the people on this site who have so many problems. Interestingly it adds that doctors themselves wouldn't take them. Says it all really.
in reply to
Now, you really haven't read the details.
What details? I saw the article in the Mail first then read the Telegraph article online. They both say the same thing although the Telegraph is more lengthy. As I read it NICE are telling drs to prescribe statins to anyone who has a QRisk of 10%> a drop from the current 20%. And the side effects are all in the imagination apparently .... Personally I don't take statins, my cholesterol is borderline high, but I am at high risk of diabetes apparently so although my Qrisk is 14% thanks to age and hypertension chiefly, I wouldn't accept them and my dr knows that!
in reply to
You have restricted your interpretation of the issues, as sadly many people do on this forum, to the nearest journalistic reports. You have then based your opinion on half understood facts. I'm suggesting you don't do that and look a little deeper at the actual issues. You would then see why what you are saying is questionable.
Fine, go ahead take your statin don't take your statin but base that decision on facts and not fiction.
What is a frightening shame is that this forum has several active members who assertively present their opinions as fact, who assertively offer their opinions as learned and they are neither. Sincere people seek sincere answers and are met with hobby quackery. This should be challenged.
So, go ahead, don't limit yourself, follow the link provided and fundamentally understand what the paper behind the journalism actually said, it's only 1000 words. Tell me what you think. You will see that at very best the paper stretched the findings extremely. You will also discover that the evidence to support the discussion on side effects is weak, this could easily be improved but several vested interests/processes prevent that and that is the actual problem. If there is a problem the statin community wants to challenge the lack of real side effect information.
lillywhites in reply to
can i ask are you on statin medication?
in reply to lillywhites
Yes. I take statins. I expect to take them for life and I am much much younger than most who post here. There are no side effects For me, I take a relatively high dose which is very effective and I'm reassured that my risks are managed using this technology.
Why do you ask?
lillywhites in reply to
well im very happy for you that you dont have any side effects but it can take upto a year or longer for you to get any side effects statins are a horrible drug its ruined my life and there are many many people around the world who suffer with the side effects to statins go do your research on statins try and watch statination documentary it will open your eyes to this horrible drug take care now
ursa in reply to
I had been on statins since 2006. I was diagnosed with type 2 diabetes in 2008. It may be a coincident, but the link to me having taken statins is not impossible.
I was prescribed a higher dosage of statins about 6 months ago. I did realise that I was feeling more tired than usual and my muscle structure seemed to lessen. I also started to have nightmares and some breathing difficulties.
I did not make the connection between my new symptoms and the new drug unless I read up - by accident - on the criticism the prescription of statins did receive from highly professional medical personnel.
I asked my GP for a review of all my medication. She said that I did not have to take statins, but she could not advice me not to, because I had diabetes and therefore was in the high risk group.
I stopped taking the drug about four weeks ago, and I do feel better. One could argue that it is all a placebo effect, but I am not very susceptible to insinuations.
I am afraid that the NHS hierarchy - not necessarily those that are medics - have convinced themselves that by putting a large percentage of people on statins, money can be saved, and that it is a good thing for both the NHS and patients.
Statins may be beneficial for many, but there seems to be - at least - a very sizable minority that actually suffer because of them, and many may not even have made the connection.
I now think that the NHS are under a delusion to have found a wonder drug to stop people having heart attacks and strokes.
More proper research - independent from the pharmaceutical companies - is required, in my opinion.
I do agree that you have to read all "popular" articles on statins carefully and then if you can try and read the original article. I know this is something that Penel always does and puts up the link.
There is so much utter confusion about this cholesterol business, not helped by the daft medical names and distinguishing when something is pathological or not. I do not agree with people having drug treatment for a level of 5.2 but what about when it is 8.7?? Is that an illness that needs treating (I am still searching for the answer).
For me, the main crux of that article is that this is information from drug trials which often do not relate to the patient in the GP's surgery. The NICE are only draft and I for one do not agree with people with a 10% having lifelong drug treatment, but I do agree with people with readings in the 90th percentile considering their options.
“grow up” really - you can do better than that challenge what i’m saying with some facts not bullying. Don’t mistake a difference of opinion for a patronising opinion. Go on read the link not my post, see what you think. [the post i was responding to was removed for being offensive]
Some balance is needed many people take statins quite happily with no negative effects and do that long term - i do. This is rarely mentioned here in this forum. If you read this forum you would believe the opposite. I would have found it personally helpful if i had come to this forum and found:
1) positive and negative stories
2) Less speculative opinions posing as fact
If you want to call for something constructive, call for heart UK to push the relevant UK and European regulators to reveal the data on Statin side effects, push Heart UK to raise the money to commission a randomised, controlled clinical trial looking specifically at the potential side effects of statins in the whole UK population (not just the people on this form). If the patient corpus could manage that it would be a real and constructive triumph.
It is correct there isn’t any cast iron information on the side effects issue that was really what was discussed in the underlying article. We are all vulnerable to potential side effects after one day, one year, 10 years, 30 years and there is no clinical information for us, our doctors or the regulator to act on.
It is badly needed. Into the information vacuum falls a lot of unhelpful, sometimes hurtful speculations as to what is might be happening. I feel the focus on side effects should not detract from the fact that statins do appear to prevent serious and sometimes catastrophic cardiovascular events. For those that live/have lived with the consequence of that know this is something worth avoiding if you can.
This is one of many issues that needs to be addressed an indeed more work is needed on the underlying LDL hypothesis of heart disease. I guess the wisdom of herd prescribing statins to those with a >10% risk will be come apparent in the future. For me the answer is to campaign for justice. Campaign for information. Not to turn to quackery.
Andyman in reply to
As you have found out it is a dangerous pastime to comment favorably on Statins on this forum. I understand that it has side effects for some but also understand that it does not have side effects for others. But express an opinion that is pro statins on this forum.........
Penel in reply to
A campaign for more information sounds like a good idea. There are many problems around the complexity of the science, and being sure of how statins work.
There is research on the the effects of statins being gene related, this might hopefully mean better targeted medication. I don't know the details of the study.
ncbi.nlm.nih.gov/pubmed/225...
in reply to Penel
Well that put a little dampener on it. Everything is possiable Is this really that complex, relatively i would personally say no, a better disease registry or one that was analysed would be a start. Your bottom sentence is the issue with all medicine. Once that question is unwound we will all be better off. Mean time why isn’t more being done money or complexity. I would guess the 1st.
Penel in reply to
A better disease registry would seem to be a basic requirement for so many conditions! I guess the problems with IT may be one of the causes?
With reference to the side effects of statins, this American paper from 2012 talks about muscular problems with simvastatin for people with a particular gene. It's the full report, which isn't always possible to get without paying.
ncbi.nlm.nih.gov/pmc/articl...
I probably spend too much time on the internet.
cleocat in reply to
Hi amp_6000,
I really like the last 4 paragraphs in your reply to the offensive post and I couldn't agree more with what you have written.
I have also read ALL the article you gave us a link for. I think it changes nothing. The evidence is not all there (excuse the pun) and more study is needed - drug companies don't like their products slated. Surely someone, somewhere is altruistic enough to dredge through all the sludge presented by these reports and come up with the bright shining truth? When are you getting up the petition to Heart UK?? I will sign it.
in reply to cleocat
..
The side effects ARE not in the mind, they were, for me, in the muscles.
Stuff what Nice or the Mail says. Maybe these guys rave shares in the manufactures?
I think we need to read everyone's contributions with an open mind and a willingness to understand why they are taking the position that they are in discussing these issues. Most people search for information on the internet and join sites like this one because they have an issue in their lives which they are seeking to resolve. Therefore the balance of contributions on this forum is always going to weigh more heavily towards the difficulties people are experiencing. Contributors, myself included, have often experienced problems in getting the medical profession to listen to us and this is a place where we can share our anger and frustration. Yes it is good to hear positive stories but it is unrealistic to expect a balance of positive and negative on this forum.
The NHS website gives a description of the study and a link to the original paper. The NHS article also talks about the limitations of the study. It's a lengthy report.
nhs.uk/news/2014/03March/Pa...
in reply to Penel
Yes, but this write up does not include a discussion of the authors concerned at the point of publications and does not address the point about side effect data being known but hidden (hidden from medics and the NHS)
I don’t think it is unrealistic to be positive. This is in many ways a good situation. Up till now people just dropped dead, when they should reasonably expect to live long - they need not do that any more. But, i feel we are a group of patients who are being massively let down. We are all struggling, with side effect, with the implications of early death, worries for our children, worries for our future. We need to do something, do something more than vent frustration or push our personal treatment beliefs on fellow strugglers.
The answer isn't on the internet. That is where information but also misinformation lives. The internet research isn’t revealing anything new just different perspectives. For me the issue is not what the internet says it is what is the medical process, that we all pay for doing to help? It should be being done for us.
Why is my GP clueless? why do i pay £7 for a prescription when the package that is dispensed costs 60p? Why aren’t the effects of taking medicines for decades measured and understood? why is the statin side effect data hidden? why isn’t there medical consensus on the underlying disease mechanism? why are people who need medicine not taking it and why are people who don’t need medicine swallowing pills? Why aren’t patients being educated so we can identify what is fact and what is fiction? why aren’t there loads of new treatments in development (once a month pill please)? why is the dietary advice so contradictory, unhelpful and confusing? There is huge list of questions that the internet can’t answer.
What is the government, NHS, academia, Heart UK, British heart foundation doing. If we have he energy to internet search and ‘vent' on here maybe we have some energy to hold these peopler to account. It’s 7m people living with a lipid profile worthy of mediation. That’s Scotland, Wales and N. Irleand put together its a large, large minority.
I wouldn’t watch a film on a Betamax video anymore so i’m wondering why i’m being left with a 30 year old technology (the satin) and being told to get on with it - i had hoped for better.
So you see i’m as frustrated as the next, but frustrated different.
florence5 in reply to
You don't seem much different to me, from what you have written here. So what are you doing about it, apart from writing on here. Let me know and I'll join you.
Well, good question. I did contact Heart UK with various offers of help and made an ongoing donation. I discussed with them what i could do to help, they labelled me an Ambassador and then i never heard from them again, which was a bit of a shame and a disappointment.
I think the organisation who are supposed to represent the patient Heart UK and to an extent BHF don’t seem to be discussing the same issues as the lipid patients. They aren’t for example raising side effects. I read Heart's policy objectives last night and i don’t see the issues strongly reflecting the patient issues raised in this forum. So i decided i’m going to write to the chief executive and put the points i roughy make above to her and see what the response is and then react to that.
I also looked quickly at their upcoming conference programme. I didn’t see a speaking slot for the patient. Plenty of time for the corporate sponsors but no slot for the patient sponsors. This doesn’t feel right to me. I’m tempted to make a submision and ask to speak, from my own and families experience about the problems…….
Penel in reply to
You raise some extremely important questions and problems AMP. I think the whole forum would be interested in any response you may get from Heart UK.
florence5 in reply to
Two great ideas and some positive action. As Penel says we will all be interested in the response from the chief exec and the conference organisers. I would love to attend the conference, but live too far away. It would be good if the members of this forum could contribute in some way towards these actions or come up with some other ideas e.g. a questionnaire for members which identifies and collates the main issues and questions we all want answered, some of which you have listed above.
Am trying to reduce my cholesterol through what I'm eating (which will also help me to lose weight) and exercise. Am now eating healthily, however need to do more exercise. I've lost a stone in weight since December and am now BMI 29 rather than BMI 32. I really don't want to go on statins, as I don't want to be having to take medicine for the rest of the my life. Its bad enough having to use a salbutamol inhaler for asthma.
Thanks, do ask what is happening, let us all know. . I will also write and ask and report back.
I studied the programme as it is, and i stand to be corrected, but i didn’t see the striking patient programme 2014. I may have misunderstood, but i have read the published conference agenda twice and i can’t see the substantial patient section. I assume the patient’s voice is being scheduled. If you have any info. on who and what is scheduled i’m sure i’m not alone in being interested in what points are.
Let’s see what the cep says.
yes
in reply to
I say yes. I don’t know what you mean exactly by AMP. I’m asking for a speaker place at the Heart UK conference and will make a submission for this place….If we get just 10% of the perspective heard this appears to me to be better than just now.
Yes. I have FH.
Please read my contribution from last October (I think) headed "Statins" so I don't have to repeat myself. (health unlocked.com/user/Floozie).
I am 68 & was found to have an elevated serum cholesterol (around 10-12 mmol/l) 40 years ago. I have taken cholesterol-lowering medications ever since & was prescribed a statin by Prof. Paul Durrington at Manchester Royal Infirmary when they first became available, which must be about 20 years ago now. I have familial hypercholesterolaemia, with normal HDL & triglycerides & raised LDL. I also take Ezetrol, 10 mg. daily, which reduces cholesterol by another 10-15%. I have taken simvastatin & pravastatin (in high doses) in the past & currently take rosuvastatin, 40mg. daily. I have never had statin-related side effects, but make sure I have regular blood tests to ascertain my CK level, elevated CK being an indicator of muscle damage. My therapy brings my cholesterol level down to within normal limits & a daily Benecol drink reduces it further. I do not follow any specific diet. I am convinced that statins are already prolonging my life. My parents both died at age 63 from cardiovascular incidents.
Statins do have side effects as I had these whilst taking them (memory loss, weakness) However others take them with no problems at all. So I would be interested to know if your blood group has any connection with the out come to side effects or not.
Nicely put Amp6000' I for one really appreciate what you are saying. All this Dr Kendrick this and that is polarization which leads to confusion for most.
Hi Traci,
Could you please let me know who decide on the travel bursary and when will they inform us.
Thanks.
Its great to know its just my Imagination
Instead of mentioning side effects again and again, I think a different challenge to the 'clinical trial' data may work.
1. What has actually been proved regarding the usefulness of statins, apart from lowering cholesterol?
2. What type of cholesterol is being reduced?
3.There is a lot of confusion regarding 'good' and 'bad' cholesterol and 'total' cholesterol in respect of the ratios being used to 'assess' one's needs to take statins
3. Is a 'high' cholesterol count always bad, for every human on this planet?
4. Where is the evidence, in statistical format, regarding the lives that have been 'saved' by statins?
5. Where is the evidence that taking statins prevents or reverses clogging up of arteries?
I think we should sent Jeremy Paxman to interview some of those that are trying to push statins down our throats, regardless.
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