Stopped Taking Statins
 

Well it has been over two months since I stopped taking Simvastatin after reading the article in the San Diego paper and seeing the main side effect was the unusual total lack of energy. This has been building for several years and this past winter my doctor had my heart stress tested, radioactive dye tested, sleep apnia study and could not find anything wrong in those areas. As a matter of fact my heart was better than those of most 50 year olds (I'm over 68) so we were still scratching our heads. It had gotten so bad that if I went to Costco to get some food that I would not be able to fully unload the car when I got back and would have to lay down!

So the main issue is high cholesterol and today I'll see the doc and get poked and prodded and the paperwork for my normal blood tests so we'll see what has happened to the levels. I told her that I was at the point of not being able to go on much longer but after stopping the meds the turn around has been so dramatic it is scary! Makes me almost want to get my 914-6 race car back from the Volkyland museum but the wife said NO!

Mom having survived WW2...(Allied bombing)
Colon cancer...
then Breast cancer..
some car accidents..
raising me...
was told to start taking same recently...
she's very active & over 80..
she declined & went home..
and mowed her yard..

Rika

I stopped taking Simvastatin accidentally.

Like you I felt constantly fatigued. Odd muscle/joint pain and really bad bloat where it looked like I was 30 lbs heavier than I actually was.

My prescription needed renewing but my doc could not see me for the yearly and I was going away on vacation.

He gave me one more 30 day refill but it was a few days before I could pick it up.

I had always suspected it was contributing to some of my issues.

After a couple of days without it I felt just the slightest bit better so I decided to see what happend if I stopped, after all I could always get back on it and what harm could a week or two really do.

In less than 2 weeks I had more energy and my "beer belly" was gone. My wife looked at me and asked how I had lost so much weight in such a short period of time.

I really looked like I was pregnant.

I've given up bacon, eat red meat maybe once a week now, load up on Omegas and do just about anything I can to reduce naturally.

Last cholesterol test I came in slightly over borderline.

Have a physical coming up again soon so we'll see what's what.

Coworker's husband got off cholesterol meds by going vegan ...

I hope more posters chime in on this.

I have had this theory for a few years. Doc just said I was getting older and that some of the symptoms I was seeing were normal.

Tired
Fatigued
Bloated
Muscle soreness
Joint and Ligament Loose / Tight
Loss of stamina

Tell me more

Damn. I have been incredibly discouraged by my seemingly endless fatigue. Also tried the CPAP...eating NOTHING but healthy food....exercise....no help. Came home from work tonight and mentioned my fatigue to my wife. Actually googled causes of fatigue on the web tonight....nothing jumped out at me.

But then, this thread. And guess what? ................I am on Simvistatin!!! I don't know if it is the cause, but I am going to stop taking it TOMORROW. My cholesterol was VERY borderline to start with. I.e. 160 - 170 total, but low HDL. I'll find something else for my low HDL, even if I have to eat a 20 lb salmon raw to get the right amount of fish oil!!

I'm going to ditch the Simvistatin for a week, and not change anything else, and I will report back my findings. john rogers....how long did the turn around take?

Thanks in advance!! (even if it doesn't work, it is worth a try)!

JA

Yup, not much more to say other than those were my symptoms and they all went away when I stopped Simvistatin.

The fatigue was the worst. Just constantly dog assed beat up tired 24/7.

Funny thing is my MIL is taking Red Rice Yeast. She bought me a bottle. Started taking it and the first thing I noticed was bloat. Did a little reading and yup, it's a statin.

I was on lipitor for a while, but felt that created a problem with lack of energy. Since then, I've been on Zocor (Simvastatin) for many years. It's hard to do a comparison, but the very action of these drugs is going to cause some side effects as described. Its whether the higher levels of cholesterol are more important then the side effects. Since being on it, my levels have been in the low 100's and all the good and the bads at levels below the norm. I also take 2800mg of fish oil and COQ10 200mg along with D3. My dad, who is still living in his 80's, had bypass surgery in his 50's so its in my history. I would rather risk some fatigue and other side effects rather then a bypass any day. I still do everything I can and run 10-15 miles a week. Can't say I still don't feel tired at the end of the day but I chalk that up to turning 50:D. If you can go off them and still have good cholesterol levels, do it. Just make sure you keep them checked.

I had been on Lipitor for years, cholesterol was borderline... I never felt fatigue or bloating that I could attribute solely to Lipitor... My paunch and bloating were a result of a ****ty lifestyle, bad diet to much alcohol etc...

This past January I had an epiphany... joined a gym, changed my diet, curtailed intake of alcohol to a few drinks on weekends if any... I've lost 12 pounds, my blood pressure is under control, cholesterol is still borderline... Dr wants me back on Lipitor, but I am self medicating and will wait a few months and see with my new diet and lifestyle, if my cholesterol goes down...

I went through every statin on the list, every last one of them. I have extraordinarily high cholesterol (can't remember the numbers as I refuse to let them do the test anymore). I had a number of side effects ranging from fatigue and lethargy to gaining 20 lbs in 3 months and with every one of them significant stiffness and muscle pain.

It got so bad on Lipitor that I had to roll out of bed in the morning and spend 5 minutes just trying to make my legs bend.

All the while, the doctors were saying " why aren't you dead yet - your cholesterol signals you are a walking heart attack". You are committing suicide by not taking statins.

Insurance companies refuse to give me travel insurance or life insurance.

That was 10+ years ago....by the way, I have a resting heart rate of 52, no family history of heart disease 2 generations back, no other risk factors. I have done the stress tests, heart tests and every other kind of test there is...no problem at all.

This has certainly increased my sceptism of the medical profession, particularly when I did my reading, brought the other research to their attention to which their response was - you are not a doctor, you really do not understand.

Yeah right....all I have is a degree in theoretical physics. Not worth much I know...

BTW, your mileage may vary, just keep in mind that statins are not without risk of side effects.

D.

If you do a search for the statin test that was in the San Diego Union Tribune (U-T) about 12 June of this year, the article is on line and actually ran a whole page and then some! Some additional side effects noted were the soreness of muscles, unexplained tiredness and random or unusual memory loss. That was also affecting me as it might happen once or twice a day and then go for weeks without any strangeness?

If you are considering stopping, I would talk to the doctor as there can be some physical changes and the biggest I noticed was the change in my dreams and they seemed to repeat more than in the past? Some of the other issues are mentioned in the article so please check it out and talk to your doc. When I talked to one of the study folks, they mentioned some mental changes possible since the make up of the blood going to your brain is a bit different now and in this case you might start to worry about how bad my blood is becoming.......

There was a pretty long thread about this some time ago. I am on Simvastatin now with no noticeable side effects - that I can identify. My engergy level is mostly high. I contribute my slightly & occasionally faltering memory to aging, but who knows. My first test was 284 in my early/mid 30s, and the doc (Kaiser) I had then put me on Mevacor, which I took for 3 years & my cholestoral level didn't change a bit. So I talked to him & we decided I should stop & try low fat diet, etc., etc. which didn't do anything either. The doctor I have now put me on increased dosage of Mevacor (didn't do anything again) & then Vytorin (the one that works two ways - reduced liver production & reduced assimilation as I understand it). I took that for about 2 years & my levels went from 318 to 260 to 160 to 115 (total). After a while & for a long time I suffered from memory loss & confusion & couldn't connect it with anything. I thought I was headed for Alzheimers (sp?). I eventually started having severe muscle pain & extreme & increasing weakness, especially in my upper body. I stopped taking the Vytorin & started to improve immediately. After that I went back on Simvastatin with levels now in the 160 to 220 range. I've been on it now for another year & a half & so far so good. This stuff seems to affect lots of people differently.

I can't believe we are having this discussion. Since the strokes and surgery they have had me on simvistatin. I gained 20 lbs in 3 months even though I walk about 2 miles a night with Jack. Now I did quit smoking at the same time so I have probably been eating more, but all my weight is in my belly ..like a beer gut. I don't drink any alcohol at all. So now you all have me wondering if my paunch and weight gain are related to the statin. Hmmmmm.

I'm a doctor, guys, and I prescribe Simvastatin because it's cheap and works well for most people. But not everybody. And the bottom line is that cholesterol is more a function of your DNA than your diet so talk to your family doctor and if Simvastatin is giving you problems, swtich. Crestor is what I take now and I am symptom free after feeling like I wanted to die on Lipitor (atorvastatin) and not much better on Simvastatin.

Crestor can bung you up. If you start on it you better start eating lots of oats or it can get quite painfull. :)

Why are statins the only type of drug prescribed? I've been on cholestyramine (Questran) for years. 4oz of powder mixed with OJ each night. Absorbs cholesterol (fat) in your gizzard and turns it into a nice turd you expel in the morning. Has kept my levels in check for the last decade.

Reminds me of the saying, "if the only tool you have is a hammer, you view every problem as if it were a nail".

DON'T TAKE THEM!!! They really F'ed my father for life! He was on them for about three months, and now can hardly walk. He had the severe side effects and they were permanent! The drug companies push this crap to make money, they don't give a crap about your health!

I would certainly say that my experience has been that the muscle problems do not go away, the damage appears to be permanent.

I would sue the buggers but I have no way to prove that statins are the root cause...

D.

Well, now you've got me thinking. I'm on Simvastatin, have been for a few years and the fatigue and paunch are really noticeable. Odd joint pains that come and go and muscle pain. I'm going to take 30 days off and see if I notice an improvement.

Back when I stopped taking Mevacor, Kaiser wanted me to go onto a diet program they recommended. I have mostly always gotten a decent amount of exercise. I tried that for quite a while with no results. Each time after that I would get my cholestoral tested & have a high number, they would send me a letter wanting me to go onto that diet program. One time I sent a letter back stating what I'd done to lower it - diet, exercise, Niacin, medication, etc. They sent an answering letter saying some people had a naturally high cholestoral level without other factors (bad diet, overweight, lack of exercise, etc.) and lived out their lives to the fullest to an old age. Go figure.

Was on Liptor...started to have some muscle pain and stopped. Bin on Provastin while I don't think it is a effective, I will struggle along with it as it does not seem to have much of a side effect. And did anyone say a Buffet?

Thanks for all the inputs and to the original poster of this thread. I was thinking I was getting old and just inflexible. At 48 I can no longer cross my legs. My hips keep me from crossing my legs when sitting. Also about a year ago I morphed this overhand called a gut (you know a shed for the tool!) I exercise no junk food and I chalked it up to genetics. Have been on statins for about 8 years. Part of the "diabetic cocktail". I am going to call the endocrinologist and make a change.

Before everyone jumps off their meds and gets coronary heart disease, many of the symptons relayed: fatique, muscle loss, weight gain, and general problems are a very common side effect of......growing old.:(

Except when they start after taking statins and stop when you stop taking statins.

We know the risk.

Honestly I put it to some of that but a 46 year old should not wake up fatigued.

When I stopped I set a limit of two weeks to see if I felt any different.

If two weeks off the meds was going to be the nail then I was already a dead man.

Only took a week to confirm.

I spoke to my doc about it and got his OK to try alternatives.

Agreed that you raise a fair point, but in my case (as an example) my weight gain was over 3 months with no change in diet or routine...it was finally my wife who said that I had to get off the stuff as she was the one that made the connection.

My irritation is not that there is concern about cholesterol on the part of the medical profession and neither the fact that their cures have side effects, it is much more that between the docs, the insurance companies and the drug companies they have made the case that "you are going to die immediately if you don't take our drug" and then ignore that it just does not work for some people.

D.

Well, as promised, I stopped taking Simvastatin for about 10 days to see if it improved my unending fatigue. I think I had a small placebo impact the first couple days or so, but honestly I can't say I feel ANY change from stopping the statin. I was VERY hopeful that I would notice an improvement like many suggested here, and wish I could report that I did, but I can't say that it helped in any way.

Back to the drawing board for me. I also take Tricor, which is not a statin. I may try a similar experiment with that one, but I am back to square one on my constant fatigue.

Thanks for the suggestion. I hope others get some sort of benefit/relief.

JA

Stopped taking them the night I read this thread 8-22-12 14 days ago

I think the morning soreness is going away.

I still have been hiking and riding my bike. Yesterday was a 12 mile MT bike ride, steep mountain hike the day before grouse hunting. I felt pretty good this morning, big difference in the muscle dept. I may have skipped the MT bike ride day 2 if I was still taking the Statin.

Need more time off them to decide if this is causing the trouble.

I was briefly on them. My cholesterol numbers are actually quite good but a CT scan at age 40 showed plaque in the (I think) descending left artery (aka the widowmaker). My doc wanted to treat aggressively. I was on them for about a month and said, "screw it." I felt terrible. A full stress test was clean and I decided to just try and do exercise and diet (well, sorta). My cholesterol remains low - thanks, dad! I'd say avoid them if you can. Actually I try to avoid most meds that I can...

J - I would give it maybe two more weeks. If you don't feel any improvement, I think you should get with your doc & have a serious discussion about the fatigue. I'm assuming you've already done a little research on the Ticor to find out whether or not fatigue can be a side effect of that. I felt a definite improvement by a week after I stopped taking the Vytorin. Constant fatigue can be a symptom of some serious things. I wouldn't mess around just stopping medications to find out if one of them is causing it.

Google Statins and ALS. The Mayo article is insightful. Follow the links to subsequent articles.

Mayo Clinic articles are always very good albeit conservative. Read other hits for a more complete picture.

Well I had the first blood test since stopping the meds and the doctor's office called and said my numbers were high and she wanted me to start taking the statins again. So I made an appointment for next week to see how high they are and if there is anything else we might try. As for the side effects, they have about completely disappeared and my strength and endurance had come a long way.

On Sunday I shot a black powder muzzloader match and ended up with the 3rd best score and the temps got over 100 in the shade! I could never have done that 6 months ago!

I stopped about two weeks ago, and am feeling better. The pooch is slowly receding as well.
I'll talk to my doc next moth about a different approach.

Marv...I am doing just that. I have an appointment with my doc tomorrow where I will confront the fatigue, and discuss the statin and the Tricor.

Milt....very interesting. My dad died of ALS (in 1983). He did not take statins, and ALS is not hereditary, but that is a scary thought. I am more convinced of the linkage to head trauma (NFL and boxing) linkage to ALS. My dad did fall off of a high ladder (he was a gifted finish carpenter) at one point, enough to permanently damage his hearing. I can't help but reflect on that as a possible cause.

Thanks for all the thoughts. Best wishes to everyone who is having challenges.

JA

I've been on Simvastatin 40mg for almost 4 years now. In the first year or two there were a couple times where I thought I was experiencing side effects like described above - some soreness and fatigue mainly - so I went off for 30+ days to see what happened. No difference! So, in my case I chalked it up to getting older and trying to keep up with my young kids and stressful job.

Over this span I did lose 30 pounds, quit drinking, improved my diet somewhat, and started sleeping a bit more. That has made a huge improvement in my overall well-being and probably my non-medicated numbers as well. I'm thinking about asking my doc to lower the dose to 20mg. I doubt it makes sense for me to go off completely as high cholesterol and some heart disease runs in my family.

On a completely vegetarian diet with no eggs, etc... my cholesterol is 300 and NOTHING I do will lower it, so the Dr agreed that we'll treat it with 20mg of Zocor a day and no side effects and my cholesterol is about 180-200. My Dr says that genes determine the level more than diet and activity and that diet and exercise will only lower the level about 10% or so...

Nothing on genetics..............??

If your predisposed genetically then your screwed! My father had four heart attacks before the age of 52 and dropped dead on the 15th fairway of his favorite golf course in LaCoste California at age 53. He was not a good candidate for the then experimental open heart surgery, so with nitro in his pocket he knew he was finished! He golfed til he died. I being always thin and athletic inherited his bad genes and out of no where had a quadruple bypass at the age of 50! I was active with four arteries each 95% blocked! I was prescribed Lipitor but moved onto Simvistatin after that. With a daily cocktail of Lisinispril, Atenolol, Niaspan and the statin, a baby aspirin, vitamin D, folic acid and a multi-vitamin, I am a walking drug billboard.

You want to feel like you got whacked across thew head? Take a Viagra!

My bad cholesterol goes no higher than 40, but my good cholesterol despite the heavy fish and vegetable diet and exercise stays low...............genetics speaking.

I will take some of the fatigue and dizziness that comes from what I take daily to keep me going. But I also put into perspective that I am soon to be 65 years old and do not expect my body to behave like I was in my 20's. From being an active sailor, taking on big home improvement projects alone and working on my Porsche I think I am doing quite well these days.

I will always take the medication, but if you like me are victim to some bad genes handed down, be the wiser and take control of it with whatever measure you see fit.

Bob

I'm in a similar situation genetically. Nothing I can do except for meds will lower my cholestoral level. However I have an old friend from grammar school who supposedly benefitted from exercise. His parents both died around 50 from heart attacks. He was always active athletically. He ended up teaching at a high school and coaching the cross country team for years & years. Of course he ran with the team and ran on his own when he wasn't coaching. When he eventually went to have a scan, the cardiologist asked how much exercise he did. My friend told him how much he ran each week, and the doctor said if he hadn't done that most of his life, he would have been dead long before. Apparently his major arteries were all clogged and the lateral ones had enlarged over the years to compensate. At least that's the story he told me.