More about muscle pain and statins

[Liz]

:x :( Hi this is an update on my previous message about statins and muscle pain. Well I had my blood tests done and my cholesterol level is now 9.4 ( English ) I follow a strict diet and keep active as much as I can with the muscle aches and pains that I have. I contacted my doctor and explained all about my symptoms he simply said that it could not be the statins !!! I then asked if I could take co-enzym Q10 to help my symptoms. The answer in short was in England we do not no of any benifit of taking Q10 with statins !! so the answer was no. But then he contacted a Specialist to explain what I had said about my muscle aches and pains and came back with the answer I am going to change your statin (Lipitor) to a new range of drugs. I have yet to see my vascular clinic as to what he has prescribed for me.I have done a lot of research on statins and Q10 and the benifits speak for themselves. Will keep you posted as to how I get on. :)

[sos_group_owner]

Hi Liz,

How are you doing?
Did you decide to take CoQ10?

Fran

[Liz]

:D :lol: Hi Fran thanks for your concern shown, yes I ordered 200 mgs of Q10 and have been taking it now for two weeks, I am off the Lipitor but my Doctor has put me on Crestor 5mgs, the muscle cramps stopped very quickly but my calf muscles still feel stiff and they feel as if they are pulsating at times I expect it will take time to heal the damage that statins cause, the only problem is reducing my cholesterol on a low dose statin but will be having a blood test soon it is 9.4 (English) and needs to be 5 or under but as I have an inhereted cholesterol problem it will be very difficult to achieve this, I still get very tired but I am sure this will improve. Thanks again Liz . 8)

[Ray Holder]

Hi Liz
Crestor is still a statin and it will carry on damaging you, but at a different rate. Your muscle problems are most probably due to a decline of your carnitine production as a result of Q10 deficiency, carnitine is needed both to carry fat as fuel into the mitochondria, and then to take the waste products away. Without this latter effect, muscle pains occur through lactic acidosis. This usually responds quite quickly with carnitine supplementation, say 250 or 500 mg a day for starters. My carnitine deficiency shows as a doubling of CK blood test results if I cease taking carnitine for just a few days, positive proof that it is needed, if your doctor should query it. Carnitine deficiency is a recognised problem, but the fact that statins can cause it has not yet reached the profession's ears.

Ray (in sunny?? Bournemouth)

[Liz]

Hi Ray sunny in Yorkshire too!! Thanks for your comments, I am aware that Doctor's here do not agree that statins do damage it is very frustrating, thank heavens for sites like this as there is no support in England at all. Can I ask you were you get your supplements from as I am on a limited budget as I work part time and my husband is retired.I bought the Q10 on line from Bodykind .com.
I am attending my vascular clinic in the morning as my B.P is slightly raised ( I take medication for this also ISTIN 5mgs) so I am hoping that the Q10 has helped with this ( fingers crossed). Thanks again for your information will keep you posted, I wish you well with your health problems. Liz.

[tuts1230]

Hi.Itook simvastatin @40mg for about 10 months without any problem along with atenolol and ACE inhibitors and finally Isosorbide which was gradually increased to 75mg a day and taken at different times of the day as I am a shift worker and if I took the iso too early the effects wore off and I used to end up feeling really ill and weak.By the time I had sorted out my med,s I was then able to cycle to and from work 20 minutes at a time plus climb 300 steps daily,this to get fit for my upcoming bypass operation.The operation was duly done on a wednesday in february 2004 and things went well and by sunday I was in fine form ,walking, eating and breathing great,woke up the next morning monday in agony from my quadrocep muscles from knee to thigh and my muscles tender to the touch.On doctors rounds he said not to worry and you can go home.The pain was incessant ,Ididn,t have to worry about any chest pains ,my legs superceded anything that my bypass had thrown up.The upshot was when I asked the specialist and my gp if I was having any adverse effects to my medication they said no but changed my beta blocker to Bisoprolol.By this time I was execising to the Papworth Hospital videos I had been loaned and attending the outpatients exercise clinic but to no avail.Eventually sent to a physiotherapist at the hospital who said I had lost muscle definition on my quads and must do lots of stepping exercises back and forwards.After 8 weeks I stopped taking simvastatin but in 2006 was persuaded by my gp to take crestor rosuvistatin at 5mg,I did for a month but the pain which has never gone got worse.I am currently free of statins but my legs are still heavy and painful and exercise does not help any.I have taken COQ10 before seemingly without any benefit but read the other day that it is a long term thing so maybe i did not give it long enough.I have just started COQ10 again @400 mg a day and will persevere longer this time.Sorry its such a long story,I hope you stuck with it and can help me with more advice on what further steps I can take to aid myself.The good news is I am still enjoying living and funny things still make me luagh,i still work and the only thing i really do wrong is i drink too much but I enjoy a drink when I am not on nightshift.regards to you all ,may we all get better soon.

[cjbrooksjc]

Tuts1230: Many of the posts on this forum laud the benefit of L-Carnitine to ease the pain of muscle damage due to Statin drugs. Acetly L-Carnitine is also recommended. As best I can determine from surfing for info, Acetyl is most effective for neuropathic damage and straight L-Carnitine is most effective for muscle damage; also, one is effective in helping the cells burn energy and the other in helping the cells dispose of waste (I don't remember which is which)... so, I take both; about 750mg each per day in two or three doses. It HAS helped, but I do suffer occasional setbacks and can only hope they will diminish in time.

Regards,

Brooks

[Liz]

:D :lol: Hi and welcome to tuts 1230, Well it all sounds very familiar this is my story so far, after being on 20mgs of lipitor and suffering agonising cramps in my calf muscles for years and feeling unwell I complained to my GP he said no not the statins but then changed my statin to 5mgs of Rosuvastatin and 75mgs of dispersable aspirin. I have an inherited high cholesterol problem it started off as ( 12 ) came down to ( 7 ) but back up to ( 9.4 ), so it needs statins to keep it down.
After taking advice from this site I put myself on 200mgs of co- enzyme Q10 each day, I also take vitamine E and codliver oil capsule each day, well the cramps stopped and I am just starting to feel better after 5 weeks, although my legs still feel heavy and a bit uncomfortable. It seems to me that you have to research and help yourself as the medical people do not want to know what damage can be done by statins, bet money comes into it !! as Q10 is available on prescription but I was told that budgets do not cover Q10 and it has not been seen to be of any help in statin therapy !!! no trials done in England.
All I can say is thanks for forums like this one and the support of other people that are suffering, take care all will keep you posted, Liz 8) :roll:

[tuts1230]

thanks for your kind words,i will try any and all suggestions to try and get relief as spending my days as walking through treacle is no fun but I can still live normally excepting for dashing across roads,I need plenty of space if I don't want to be the new mascot pinned to the front of a car.

[tuts1230]

is it safe and ok to take creatine to build up muscle as sports people do as I see it is listed on wikipedia as a similariy between that L-carnitine and COQ10.

[Brian C.]

Liz wrote:

"....medical people do not want to know what damage can be done by statins, bet money comes into it !! "

Of course. The GP contract allows them to top up their earnings by meeting targets, including driving down cholesterol using statins.

BTW I believe Britain is the only country in the developed World where statins are an over-the-counter medicine.

Brian.

[Ray Holder]

Hi Liz and tuts1230

Sorry to have been such a long time in replying, firstly the posting didn't have a marker by it and I did not see it, then I have had lots of Spyware problems with my PC, and lastly, I wrote a long posting which disappeared into cyberspace when I hit the preview button. I am writing this in wordpad and will paste it on the site when I have safely saved it.

I get my Pharmanord Q10 from [www.nutriglow.co.uk], they have the best price which I have found for good quality Q10. Carnitine is a different matter, Pharmanord 250 mg capsules are quite dear, and work out at £1 per gram in the 60 size pack, but are probably of good quality. A powder form is made by Healthaid, sold by vitaminuk.co.uk in 100gram tubs at about £35 a time, so that's 35p a gram. For me it is not as effective as that from the Polio Network of W Australia, but I have a friend who gets some help from it. As they are a very small charity, they are unwilling to spread their resources too widely, especially to USA where good supplies are available, but would be prepared to help if no other available. Their website [www.upnaway.com.au/poliowa] has a page showing how to get 100gram packs at $100 US paid via paypal, as they have difficulty with other methods. That's about £54, or 54p per gram of good quality . As a post polio, I had a greater need for Lcarnitine before statins damaged my supply chain, so I take a massive 6grams a day, but you will probably only need a gram or two. Measuring the powder out accurately is not very easy for small doses.

There is a sports drink version on sale, flavoured, but full of sugar, 1gram per tablespoonful, in a bottle of 31grams carnitine content at about £16, or 50 p a gram, from a good supplier. The Formulary has Carnitor, the licenced version, but it costs £3.50 a gram and you are very unlikely to get it on prescription, carnitine deficiency is only medically recognised in a few cases such as newborns, but it is actually there in post operatives, post polios, penicillin and valproate meds patients, as well as from statins,

Beware of physiotherapists advising exercises when you have a carnitine deficiency, your muscles will feed on their own protein and cause further damage if there is insufficient carnitine to carry fat into the mitochondria to fuel the energy needs of the exercise.

Ray

[Brian C.]

Thank you for the information Ray.
Re exercise : maybe something along the lines of Tai Chi/Qi Gong may be appropriate. I've just ordered a book and will see what it entails. Seems a sensibly gentle approach.

Brian.

[adec]

Liz.... Actually, I would also recommend taking Vitamin C, especially if you cannot afford to purchase a lot of CoQ10. Vitamin C is very inexpensive and will help to increase your bodies own production of CoQ10. Vitamin C will also be helpful in lowering your cholesterol, and other such predictors of cardiovascular health.

And if your doctor fights you on the importance of CoQ10, print out the below link and show him/her this list of precautions from the Canadian New England Journal of Medicine, including how statins deplete CoQ10.

[http://img259.imageshack.us/img259/4706/statinslx8.jpg]

And by all means stay away from all statins, or any drug name ending in either 'or' or 'in.' Such as Lipitor, Crestor, Zocor, Mevacor, Simvastin, Lovastatin, atorvastatin etc. These doctors can be very tricky. Take care and good luck.

[poohhel]

Correct me if I am reading all of this wrong, but from what I am understanding....the muscle pain and cramping I am feeling is due to muscle damage??? Is it safe to still exercise even through the pain? I have stopped the Vytorin and I really want to try and begin to lose some weight that I have gained over last 16 months...but my legs always hurt so bad (burning, cramping, and numbness) when I try to work out. But since my hubby and I are going on an International Cruise in May, I wanted to try and force my way through exercise...but now I am concerned if this is a safe thing to do?

[adec]

Poohei, the skeletal tissue is chemically broken down by high-dose statins. This in turn releases enzymes and other toxins into the blood system... which is the pain you are experiencing. If not treated, a much more rare but serious case of rhabodomylosis can develop, resulting in eventual acute renal failure.

I would probably avoid very strenous exercise. Exercising would probably only exacerbate your situation. Most likely you should IMMEDIATELY start to supplement with CoQ10, of which statins are known to deplete. I'm talking about first thing tomorrow morning, take at least 150mg gel capsules with vitamin E daily twice daily. Good luck, and keep us updated.

[Ray Holder]

poohei

Your muscle pains are most probably due to carnitine deficiency brought about by the lowering of your Q10 supply by the statin. Carnitine deficiency can cause muscle damage through the inability of the muscle to have access to fat for its fuel because carnitine must also be available to carry it into the mitochondria where energy is produced. If this is the case, the muscle feeds on its own protein to make any energy demanded, so it is unwise to take strenuous exercise in this condition.

Carnitine deficiency has a second effect, to cause muscle pain by lactic acidosis, the waste products of energy production rely on acyl carnitine from the above function to carry those waste products away. Many forum members use carnitine for relief from these problems.

The supplement is called Lcarnitine, available in capsule form, probably in 250 and 500 mg sizes. Start with 500 mg a day first thing in the morning and add further 500 mg to the dose after each 3/4 days if needed. If you are taking too much your bowels will object and you will need to cut back by one step. I believe most people take about 1500mg a day.

I have serious carnitine shortage due to earler polio, made much worse by statins, and I use 6grams a day, but I have built up to that figure over 5 years.

Hope it helps you

Ray

[poohhel]

Thank you Adec and Ray... I will go to the drug store first thing tomorrow morning and find these supplements, in fact I am going to start the "statin alternative" supplements mentioned on this site along with the Acetyl Lcarnitine.