Trying to stay off Statins.

[Geocacher]

I've tried Statins three times now with the same result each time, debilitating joint and muscle pain.

Every time I've been put on Statins it has been done by the GP, as directed by the local PCT, without consultation. When I've questioned it they will not listen to reason until I prove to them that I have a problem with Statins. After that they put me back on ezetimibe, even though it isn't as effective at lowering cholesterol as statins, at least it helps. Apparently it's slightly more expensive as well which seems to be the motive behind the PCT changing all patients taking it onto Statins at some point each year. Each time this happens the side effects get worse and take longer to resolve after stopping the statins so I'm not prepared to go through that adventure anymore.

But it's happened again, this time due to an error by a consultant I've never even seen. After they hospital rescheduled my yearly review appointment I had to ask the hospital to write to my GP to continue my prescriptions for an extra month and a new consultant suggested I be put on Statins, obviously he didn't read my medical notes.

Does anyone else have similar problems and what, if anything, finally put the matter to rest?

At this point I'm considering putting a complaint in against both the consultant and GP who have both failed to read my medical notes.

 

[kangoo]

When you say statins, have you always been given the same drug? There are different ones, my Dad was put on each of them until he got one that didn't give the symptoms you describe. I've had 2 different types myself but changed due to results, not pain.

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[Geocacher]

Simvastatin is the drug of choice under the local PCT and you are expected to prove that it's not suitable before they will entertain any idea that they should offer something else, if at all.

To date no other statins have been offered. I feel quite fortunate to have been allowed ezetimibe, the last time they arbitrarily changed everyone to simvastatin from whatever else they were taking it was reported in the local papers that the PCT gave some people no alternative. I think there's a point where saving money goes to far, and that's the point where it's putting lives at risk or leaving people disabled. The cases cited in the papers were all people who had problems when they took statins.

Based on the severity of the last reaction I had to simvastatin and the length of time it took to start to feel right again I'm not sure I would agree to try any other statins. It's been a year since I stopped taking statins and I can finally go out walking without dosing up with co-codamol. At the worst I couldn't comfortably walk far enough to get to the nearest bus stop. The first two times it didn't take as long for the muscle and joint pain to subside even though I took simvastatin for longer those times.

The research I've done shows that all statins come with a similar array of side effects for a disproportionaly high number of users and some users are left with health problems that never resolve even after stopping statins. That's that scary part and that's just not a risk I am prepared to take again, I'm too young to allow myself to be disabled just because the PCT thinks one medication is right for everyone. And if that means I might die a few years earlier, so be it, at least I'll get to enjoy a good quality of life in the time I have left.

I'm cheesed off now because it looks like I'll have to go through all that again.

 

[kangoo]

There is a routine blood test your GP can order. The test detects a chemical in your blood that is produced during muscle damage.

www.clinicaladvisor.com/creatine-kinase ... le/117850/

You need to be careful interpreting the results though, statin harm and a general blow to muscle tissue give same result. Make sure you have no bruising on body when the practice nurse takes the blood. Make sure the nurse sees you have no bruising too!

I was moved off simvastatin. My dose went from 10mg to 80mg with no effect. GP agreed large dose was ineffective and I got rosuvestatin (Crestor) instead. (Crestor has bad name for muscle damage but so far no sign and cholesterol is way down.

My Dad had simvastatin, rosuvestatin and finally atorvastatin before he found a statin that worked without muscle pain. Simvastatin is cheap as anything, that is why your PCT push it. You are within your rights to ask for a different statin when there are contraindications.

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[Hobs]

Did your GP explain that statins will effectively block naturally occurring coenzyme Q10? I very much doubt it because most GP's do not understand Co Q10 is required for proper muscle function.
Most people who experience muscle pain find that a low does supplement of Co Q10 loose the pain withing a month to 6 wks. I thought it was a load of bunkum until I tried it (30mg) and found it not only worked for skeletal muscles but also improved heart function; which of course is one huge muscle ... so my cardiologist who suggested it was right :thumbup:

 

[Geocacher]

Interesting information, thank you.

Kangoo -- I'm not sure I'd go back on statins just to prove they were causing muscle damage. Based on the last experience I had it's clear that was happening without any testing. My doctor was ready to go down the 'it must be arthritis, MS, etc. route when I said 'first I'm stopping the statins' and tuned out his well meaning argument against that. I was right, he was wrong. If I'd known about the test at that point I probably would have requested it.

Hobs -- I've never heard that about Co Q10, worth investigating. I wonder if a person can be tested for low Co Q10 rather than experimenting with statins to see if it works?

I spoke to another endocrinologist today and apparently what my GP did by insisting I prove I react to statins to be allowed anything else was not exactly good practice and I shouldn't have been put in that position. Hmmm... something to think about considering that many people in the area were refused alternatives.

 

[Cap'n M]

After my initial diagnosis in late 2010, despite having no classical signs of insulin resistance, I followed the normal wisdom of starting a statin. I needed only 10mg of Simvastatin to get my cholesterol down to 3.5. I stopped the simva 15 months later as I recognised that I was very intolerant to it. My main problems were generalised aches, muscle wasting and weakness with calf muscle and tendon tears on exercise [I was finding it difficult to continue my twice weekly 5-10km jogs due to musculoskeletal tears]. Further data on the link with diabetes convinced me to stop the statin.
Subsequently, I felt so much better that I realised that the statin was causing low mood, insomnia,slow cognition, peripheral neuritis, constipation, some ED and others! I have taken Co Q10 since, in the hope that it might repair some of the damage.
There is, I feel, a group of individuals who are likely to get similar adverse effects on statins.
Since I have no metabolic syndrome features, I am not concerned that I am not taking statins. I might feel differently if I was obese and had established arterial disease or whatever.

 

[Daphne917]

I was put onto Pravostatin in January last year and my cholesterol dropped to 3.0 which pleased the DN no end but I sometimes suffered dizziness and my hba1c level went up to 58 both of which I put down to the statins consequently I was put onto Sitagliptin. When I told the DN that I'd read there was a correlation between statins and diabetes she told me not to believe everything I read in the Daily Mail and her face was a picture when I told her I didn't get it from the media but the Drug company's own website. I stopped taking the statins about a year ago and I imediately felt and slept better. In addition I came off the Sitagliptin in August and my latest hba1c level last week was 42 and cholesterol was 4.3. I think that many people suffer side effects from statins which Drs ignore because they are 'good for them' and patients believe the hype as well. My mother for example tried 3 different statins and all gave her different side effects - one of which was a particularly painful rash on her legs. In the end she refused to take them but the damage had already been done and her legs never cleared up.

 

[seadragon]

I sometimes wonder what happened to the doctors Hippocratic oath and the 'First do no harm' thing. Statins seem to be something they want to give to everyone despite them very obviously doing harm in a fair number of cases.

 

[Cap'n M]

I think it is difficult for physicians to see the wood for the trees in the statins debate as a vast amount of data is presented in their favour. Doctors need to be more questioning regarding the cherry picking of the data by big Pharma and need to listen to subjects such as Geocacher.
My personal experience is that I'm very intolerant to simvastatin but I'm not insulin-resistant, so that on simva, my cholesterol went down to 3.5. I'm off statins now with a cholesterol of 4.3. I have an oats and oat bran intake that probably helps this. This keeps my GP happy. I don't believe that high cholesterol is a direct cause of heart disease but is marker of insulin resistance [50% of sudden cardiac deaths are in subjects with normal cholesterol].
The need is to avoid insulin resistance and inflammation is paramount. I believe in fish oils and ensure that my omega-3 intake exceeds 3G daily. This has an equivalent anti-inflammatory effect to statins without the side-effects.