Simvastatin 80 mg pain management or cure, HELP Please.

[billyc]

Hello
I have a question I hope some of you can help.
My wife 50 years old in very good health, very trim, she walks a couple miles almost every day, also a very low fat eater no red meat or fried foods. April 30, 2010 she had what they called a mild heart attack, 90 % blockage in her LAD they put in a stent. Both parents had history of heart failure in the early 50’s heavy drinkers, bad eaters and smokers. Unfortunately they both passed in their early 50’s . after the stent was put in she had been doing very well even watched what she would eat more so to the point of being a saint for lack of a better word. Well right after the stent was put in the doctor put here on aspirin 325mg, simvastatin 80mg, (metoprolol 25mg, twice a day) then down to one time a day, my wife never had to take any medication in her life other than a prescription maybe for an infection or cold. Just about a year after she started taking the medicines she started getting what we thought was a bad case of a stiff neck, her head was and still is pulling to her right shoulder and down forcing her eyes to strain to the left all the time to look straight. I asked her to go to the primary doctor and let him take a look at her and she thought maybe it was just stress, then the phone rang one day and it was the heart group telling her to stop taking simvastatin 80mg when she asked why they said it was not a big deal but they would write her a new prescription for simvastatin 40mg and they did. Now after a week or so she did go to the primary doctor, he told her the statin could cause muscle pain and asked her to stop taking it for two weeks to see if it would help and start physical therapy. She was given a prescription for skelaxin 800 mg they have little to no effect on the pain. She stopped taking the simvastatin and started physical therapy and continues physical therapy to this day. It has not help and the level of pain has risen since then. Since then she has seen an orthopedic doctor, had an MRI he said it looked ok no reason for pain from what he could see. Then she went to pain management to try to get some relief, they told her she needed a nerve ablation she had that done on September 2nd that has not helped, she contacted them and basically begged them to try something else, on September 14th they did trigger point and injected some cortisone. This has not helped her at all she is worse now. My question is where do we go from here should we see a neurologist? We have read about coQ10 would this help. We truly do appreciate any help you can offer.
Thank You
Billy and Sharon

[Allen1]

Hi there Billy and Sharon,

I hope that Sharon didn't go back on the Simvastatin after you mentioned she had stopped, if she did then I would stop taking them now and do not take any other form of Statin.

There is no quick method of getting away from the damage that has happened, but taking coQ10, L-carnitine and vitamins B,C, and D etc should help ease the problem. Different people respond in different ways to the effects that Statins have on them, that is also true to what will help to alleviate the problems. Recovery is generally a slow process and it often seems to go one step forward and two steps back, but it should eventually get better.

On a time scale after stopping Statins and taking the supplements, you are probably looking at anything from 6 months to over 3 years for near normality to kick in but that is going from my experience and it is different for everyone. Simvastatin sure is a nasty piece of work, its what I was taking and it certainly messed up my life too.

I know the above sounds daunting but things will improve and maybe Sharon is one of those who respond quickly once they stop their Statins and start taking the supplements.

All the best,
Allen.

[lars999]

Hello Billy and Sharon!!

Allen's post above is quite in line with my experience. I was one of more fortunate ones, my nasty effects of Lipitor (10 mg daily) abated rapidly once I stopped taking it, which I did unilaterally. However, over following year I came to understand just how extensively Lipitor had diminished my capabilities and provided me with a wide range of medical problems, some not even suspected as caused by Lipitor, that is, until I saw them dissipate after quitting Lipitor. My recovery reminded me very much of the long recoveries I have seen friends go through after chemotherapy for cancer.

High dosage of any statin drug seems a great way to harm the patient, of which this Forum contains many examples.

Your comments about eating, etc. habits of Sharon vs her family are another example of how far wrong today's most widely touted ideas are regarding causes of cardiovascular disease. It was not what she and they did or did not eat, the underlying cause is elsewhere. Yes, smoking, etc. that actually can damage lining of arteries is to be avoided -- on that there is widespread agreement. Saturated fats, red meats, fried foods, etc. have been staples of my diet for 70+years, as well as for my ancestors, and yet there is no history of cardiovascular disease or heart attacks.

Suggest you do a search of Dr. Duane Graveline's recent Newsletters for the one about Lp(a). Lp(a) concentrations in blood is inherited and is one of best candidates for a true underlying cause of clogged arteries, although likely not the only one. High concentrations of Lp(a) are too much of a really essential thing, that is, a very effective means of plugging leaks in blood vessels. Too much of it can lead to clogged arteries. I happen to enjoy relatively low concentrations of Lp(a). Lp(a) concentration can be measured via specific blood tests. In that Newsletter, Dr. Graveline suggests some treatments that may lower Lp(a) significantly.

Best wishes for extensive and quick dissipation of nasty side effects of simvastatin,
Lars

[Nancy W]

Welcome Billy and Sharon,

Sharon, I am so sorry to read about your difficulties. And Billy, I am glad you found spacedoc.com. As you are able to find your way around this site, there is much to read between thousands of posts, and the excellent articles. Each of the featured doctors writes articles and most have written books, too. I have a number of the books, and they have been very enlightening. If you read them, you will learn a lot.

Not everyone has such an obvious adverse reaction to statins, in fact many people don't even realize their issues aren't old age, but rather side effects of statins. Unfortunately, many of the side effects mimic common "aging" problems and are brushed off. In my experience, physicians are completely unprepared to deal with this until it is a huge problem like yours. Plus, since the common literature on side effects, and the commercials, list muscle pain, it is one thing doctors eventually recognize. But there are many other adverse effects that they do not usually recognize.

My story has two chapters...maybe 14 years ago, a Lipitor chapter involving searing muscle pain and the classic changes in my blood indicating muscle damage. After one month on Lipitor. Took three months to get over it on CoQ10. Then two years ago, I had some benign heart rhythm issues that ultimately were related to MSG, but, having evaluated my lipids, the cardiologist begged me to try "red yeast rice," which was the precursor to the statins. He told me it was a low dose way of taking statins. Ha! One month later searing neuropathic pain in every peripheral nerve in my body. This time I stopped immediately. I went through the usual and useless medical evaluations, all of which came up negative.

To my great luck, I found spacedoc. And read and read and read. Bought several of the books and read some more. Read Dr. Beatrice Golumb's long and very thorough research on adverse effect of statins. Then realized I needed to help myself, as my docs were absolutely clueless. I found an excellent naturopath, and with his help, and the information from this site, I began supplementation two years ago this week.

It turned out that I didn't only have the painful neuropathy, but severe fatigue. I had been in the best shape of my life at the point I started the statin, red yeast rice. I was sixty, doing deep water aerobics five days a week, and easily hiking in the Cascade mountains which surround us. The fatigue obviously relates to mitochondrial damage, as the mitochondria are the power generators in all our cells. The fatigue was shocking to me, as it came on so suddenly. One day I could exercise for 60 minutes at an aerobic pace in the pool, and the next day I couldn't even tolerate the exercise at a non-aerobic pace for even ten minutes.

Figuring out the supplementation can take time. You can read here about many people's various trials with supplements. What becomes clear, as you read on this site, that supplementation is not a "one-size-fits-all" proposition.

With the naturopath determined at first, was that I needed mega doses of CoQ10, the B vitamins (but not niacin-which has same side effects as statins), fish oils, big doses of Vit D3, and other supplements known to assist the nervous system. Within a few weeks, I saw some improvement in the neuropathy. The fatigue abated more slowly. You can read here that many have had difficulty getting over the fatigue; some of us had to even stop exercising for a time...I have been a physical therapist for 40 years, and this was difficult for me to comprehend! But exercise only made me worse, it turned out.

So, two years have passed. I have worked out a passable supplementation regimen. I tried lowering the doses over time, as things seemed better, but I discovered I cannot do without the things I take, or, within 96 hours, all the neuropathic pain fully returns. This happened to me when I was in Uganda last spring, and had to extend my stay. Fortunately we located a person who was coming over and my naturopath overnighted the CoQ10/Vit B supplement (I take Neurochondria, by Thorne) to the person who was coming to Uganda.

Lately the naturopath has been trying some additional supplements that may help the mitochondrial issue. We have doubled the Neurochondria dose, which has clearly helped. If I follow the supplementation routine closely, I now can go 5 days out of 7 with no neuropathic pain in my toes or face, which is a huge improvement. Strangely, my metric for measuring fatigue has turned into lawn mowing. Two years ago, I could not do it. One year ago, I could mow the lawn, but so slowly, and with such awful fatigue that I would think I was going to fall over dead half way through. Now I can mow it as fast as I ever could, and even am back to enjoying it. So, something is working, as long as I stay on the supplements.

The side benefits of working on being "healthy" rather than treating an "illness" have been excellent health otherwise. I can be around my little grandchildren who catch every cold, and I never catch a thing! I had a bout of chest pain, which meant I went to the ER and then had the whole cardiac work-up...they told me that my cardiac function was great, better than most 62 year olds...but boy, did I ever give all the cardiologists an ear-full!

I have paid particular attention to understanding the mechanism of damage to the "mevalonate pathway," which is the source of all of your problems...if you can come to understand these principles, you will blow your doc out of the water. Most know nothing about any of this...

One last story. My mom, who passed four years ago, developed severe knee pain and stiffness after being put on statins. I didn't know as much then. But I repeatedly asked her to ask her doc about the statins. She was not taken off, since she had "joint" pain (which was not found to be classic "arthritis"). Finally I got my parents to go to a geriatric specialist, who immediately took Mom off statins. Her long-standing knee pain and stiffness went away.

If you want to read interesting information about cholesterol, go to the Weston A Price Foundation webpage and find the information about cholesterol. We need it!

I wish you good luck in your journey...the recovery can take time, but it is definitely worth pursuing!

[Nancy W]

Just read a new post by David Staup. The title is Cholesterol. It is an article he found on his hard drive. He only has an author name but no other info. It is a great article on cholesterol and a great place to start your information gathering journey...just wanted to recommend it to you. Nancy W

[David Staup]

Thanks Nancy, I now believe I recall how I got the article.

I was doing some banking and as I always do I brought up my disability. Well as it turned out the young lady I was talking to had her degree in biochemistry and knew almost as much about the cholesterol myth and low fat high carb diets as I did. She sent that file to me.

[Nancy W]

Thank you for letting us know...back to mowing the back yard...Nancy

[billyc]

Hello, thank you for all of your time on this, Sharon is not doing any better yet, She bought some of the CoQ10 today and will start tomorrow. She has not been on statins since the primary doctor told her to stop a few months ago or longer, funny thing she went this week to heart doctor for check up her cholesterol reading I think was about 220 and the doc said it’s not bad but would like it under 200. After she told the heart doctor how bad she feels and all the pain management she is trying he said I doubt it is from the simvastatin but then asked did any other doctor mention mayopaty.
We try to walk every day about 2 miles but this beats her up, she walks with her arm up and over her back with her hand pushing on that musical to try and relieve it somewhat. We went away two weeks ago and went to play mini golf one night and when we walked in the gentleman asked her do you have a stiff neck, she just about started to cry she is embarrassed. I have been looking up Neurology specialists and reviews on them, I think we will try to see one and see if they can help. Sorry I took so long to respond, I did not think anybody responded to me I thought I was to get an email if they did .
Thanks Billy

[Nancy W]

Sorry, but not surprised, at how it is going for Sharon. Most of us have been there in one way or another. I happen to be in the hospital right now for an unrelated problem (antibiotic I was on for an ear infection gave me diverticulitis) and I have gotten into it with every doc who has come into this room and asked about my "allergies" to statins. They all leave with their tails between their legs after I get done with them! I find, every time, that I know way more than they do, and they are astonished.

The myopathy I had after Lipitor 15 years ago last twelve weeks. The neuropathy and fatigue and tendinosis I have had from Red Yeast Rice (essentially simvastatin in its natural form) has not yet abated after two years, but is much better.

I have ended up needing to take more, not less of the Thorne "Neurochondria" over time, but it works well for me and I am pain free most of the time on it. It has B vitamins, CoQ10 and acetyl L-carnitine. Recommended dose is 3/day and I am up tp eight. Every individual is different. But just so you know, it may take more than the usual dose.

I think you can set up your Spacedoc so that you do get e-mails when there is a response. I do.

Good luck and tell Sharon we are thinking of her!

Nancy W

[David Staup]

billyc

you must NOT push right now.... no walks longer than 5 minutes, no miniature golf, not much of any activity longer than 5-10 minutes, with at least 30 minutes of complete rest reclining or laying down (support the head to rest neck muscles too). This is the fastest road to recovery. once she has recovered you can slowly increase activity levels and find the maximum sustainable level.



David

[lars999]

Nancy,

Wonderful to hear that you too have such good results from listing your allergy to statins!!! Almost makes going to doctors fun!!

billyc,

Take what David wrote about taking it easy -- seriously, very seriously. Hot showers and hots soaks in bathtub did nice job of reducing my muscle and joint pains, if only for an hour or two. I also found massage and Aspercreme to be useful.

Any doctor that claims "statins don't do that" should be dismissed.

Lars

[billyc]

Sharon works full time at a warehouse store she is lifting heavy items and dealing with stress daily, I have spoken to her about taken a leave maybe disability. unfortunately we worry about falling behind in the house payments, I no longer earn what I used to due to the economy here in NJ.
Nancy hope you get out of that hospital and are well soon.
Thanks Billy

[David Staup]

Billy

I went through exactly the same situation...continueing to work at what was a physically demanding job while I tried to recover.... I changed to a (slightly) less demanding position, stopped doing ANYTHING at home, and rested as often as possible at work. after 18 months, over a period of 30 days (that I will never forget) I recovered to ~80%. That lasted 4 months when over a 3 week period of intense physical work I relapsed. I didn't just relapse back to where I was before. but reached a new low that within months I was close to suicide! seven months after the relapse I reached a level that forced me to stop work completly and apply for disability. That was 4 years ago next month and I haven't recovered to more than 20% as yet.

You MUST find a way, at the very least have her rest 100% of the time she is not working.

Have the doctors approach this as a Mitochondrial dysfunction, you can provide "proof" of this by printing out the first page of the following (remove the " ) :

"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2849981/

Most doctors know very little about mito dysfunction so look for one, most likely a neuro but some few primary care docs do also.
where are you located? possibly I can find one near you.

David

[billyc]

Hi David
we are in Brick NJ, I have looked on our health care providers web site and found a Neurology group, I think Sharon is going to try and call today when she gets home from work. I spoke with her a few moments ago and told here that I want her to read this forum, and the posts I have made and all the responses I have received, she is eager to do that.as I said I did not know until last night I was getting responses, however today I did receive an email stating there was a new response from you.

[David Staup]

Hi Billy

there are two possibilities for finding a doctor relatively close to you

the following list of top experts has two relatively close. you could call either's office and maybe they would know of someone in your immeadiate area.

*http://www.mitosoc.org/blogs/diagnosis/providers

Here is one from Balt.
*http://www.kennedykrieger.org/patient-care/faculty-staff/richard-kelley

here is the other from Philly
*http://stokes.chop.edu/research/profiles/index.php?ID=925726

the second is in piediatrics but still might be a source of a referal


the other thing you should go armed with is the following:

*http://www.umdf.org/atf/cf/%7B28038C4C-02EE-4AD0-9DB5-D23E9D9F4D45%7D/MITO%20FIRST.pdf

Print this out for yourself and your doctors and note and remember to point this out to you doc

"Negative results have a high false negative rate"

the above is the first statement made after listing potential tests...mito is very difficult to diagnose.

David

[David Staup]

oops forgot this one

http://mda.org/locate/

this is for the Muscular dystrophy office in your area.... about a third of the dystrophies are mito based.

David

[David Staup]

I would suggest you also look at this

"http://zocorlawsuit-info.com/2011/10/fda-immediate-halt-80mg-zocor/

[David Staup]

this is from the Mayo clinic and tells the whole story. note the last line :

"Other treatment options include supplements to reduce the myotoxicity symptoms attributable to impairment of fatty acid oxidation or mitochondrial dysfunction that result from the statin therapy"

this is exactly what your doctors need to know!

also see the following in the same link:

Among patients taking high-dose statins (atorvastatin, 40-80 mg; extended-release fluvastatin, 80 mg; pravastatin, 40 mg; or simvastatin, 40-80 mg), the proportion of patients reporting muscle-related symptoms is even higher:

5% in those taking extended-release fluvastatin vs 10% of those taking high-dose pravastatin
15% for atorvastatin
18% for simvastatin

note that 40 and 80mg doses of simvastatin have the highest rate!

"http://www.mayoclinic.org/medicalprofs/statin-intolerance-clinic.html

Print this out and take it in to your doctor and make sure he reads about the mitochondrial connection!

David

[billyc]

Thanks David
we were able to get an appointment near the end of the month with a Neurology group doctor. is it the mayo clinic page from the link you gave us that we should bring with us?

[David Staup]

Yes