Life Stories and Beyond

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April 24, 2016
lisakunk

25 comments

No More Statins for Me or Don’t Disregard Muscle Weakness if Taking Statins

By Lisa Batten Kunkleman

(Disclaimer: I am not a medical professional. I’m a patient with thoughts, opinions, and some intelligence and unfortunately, tons of experience  when it comes to health.)

Has your life or that of someone you know changed dramatically since starting to take statins? Mine certainly did and not for the better. You should see my swollen, stiff, achy knees. No more statins for me. That’s what I told my primary care doctor who is very concerned about my high cholesterol and triglycerides. After taking a generic for Lipitor for a few weeks, I went from being a fifty-something, daily exercising, walker to a woman who couldn’t get out of a recliner without help from her octogenarian mother. I stayed off meds for awhile and hoped healthy living would improve my numbers. It didn’t. Doc said I couldn’t control this with diet but I insisted I wanted to keep trying. He said I could try Zetia since it works differently and has fewer side effects. He gave me a generous bag full of samples to try and briefly left me in the room, alone with my samples. Before he came back, I had researched Zetia side effects on my phone. I read nothing but horror stories of how Zetia caused numbness or tingly feelings, stomach pain, tiredness, depression, joint pain, back pain and more. Several people reported they still experienced problems after being off the drug. By the time Doc returned, I had decided to give back the samples and keep trying to eat healthy, and exercise. Doc said, “Ok, I’m sending you to a lipid specialist so you and he can come up with a plan. You’ve got to get these numbers down.”

My new specialist, a Lipidologist /Cardiologist conducted thorough research on my entire medical history, which is vast and complicated. I now have the most comprehensive collection of medical records ever. I gathered information about all my diagnoses and misdiagnoses, two complete heart studies, Mayo Clinic appointments, surgeries, and chronic conditions I’ve had during my entire life. Also, I researched family medical history. All my uncles and my father had heart problems and/or attacks in mid-life. Early is what that means. Both parents and grandparents had heart-related ailments and/or strokes. Toss in some diabetes and apparently I have a recipe for heart disease. And, after some further testing and sending blood work to Boston Heart for a highly detailed analysis of my blood and its absorption and cholesterol particle levels, it seems I have Insulin Resistance with extremely high triglycerides and Familial Hypercholesterolemia. That is an inherited genetic disorder where high cholesterol levels are passed down from family members.

I’ve been attempting to be healthy the natural way; by exercising daily, limiting sugar, eating a largely Mediterranean diet full of vegetables, good fats, and healthy protein. Knowing all that, Lipid Doc told me it wouldn’t matter if I ate nothing but berries and twigs, my numbers were not going to improve without medication. I would have to try some other statins. If I couldn’t tolerate them, hopefully I’d qualify for a new self-injectable cholesterol-lowering drug, Repatha. It is from a new class of drugs called PCSK9 inhibitors that help the liver more efficiently get rid of LDL, the bad cholesterol. I’d have to inject myself twice a week. He’s seen patients’ numbers change drastically with this new drug and with very limited side effects, which may include upper respiratory infections, flu, redness, pain or bruising at the injection site and back pain. I must say, none of those sound like fun either but apparently they are not nearly as common as problems with statins. The shots are very expensive, however; many thousands of dollars per year. I’d need our insurance to approve the injectable and to do that, I’d have to try a few more drugs and see how I tolerated them.

Taking another statin was a scary proposition because of how the generic Lipitor I’d tried previously sent my leg muscles into a serious state of weakness but I agreed to try Crestor. Within two days of taking the drug, my legs were once again weak and achy, keeping me awake and making getting up steps a chore. I felt twenty years older. Lethargic. I also had neck pain and headache again after finally getting rid of migraines a good while back. I gave the Crestor twenty days of my life, and couldn’t do any more. I called Lipid Doc and asked what to do next?

I was told, to be approved for the shot, I’d have to try at least one more cholesterol-regulating drug. Pravastatin was its name. Pain and suffering was its game, for me at least. After only one pill, the swelling in my knees began. I took the pill once again the next night, and stayed awake most of the night with pain and swelling in both legs. Plus, I had a blinding headache and weakness and pain in my right shoulder, arm and hand. I felt exhausted and both feet hurt. My dear husband massaged my arms, feet, and legs then and continues to do so now. That’s because even after getting off the latest statin, I can hardly push myself up and down out of a chair without lots of groans and pain noises. If any pressure is put on my right knee, I squeal like a hurt animal. I’m icing both knees regularly and walking gently as much as possible trying to keep my legs limber but it’s not easy. You should see me going up and down stairs with knees that don’t want to bend. I’m a sight!

This situation of pain and lack of mobility has given me so much more empathy and awareness of what folks go through when their  body is chronically stiff and aching. How do they tie their shoes or go to the bathroom when getting up and down is excruciating or just about impossible. I’m wearing flip flops nowadays since I can’t bring my feet up or bend my knees enough to reach the strings without sounding pitiful. I’m also telling myself this is temporary. I felt absolutely fine a month or so ago. Without seeing blood test results, I’d never even have known I had such a severe problem. And now I’m researching things like, “Will Ibuprofen help pain from statin side effects?” The answer is no according to Mayo Clinic. At this point I’m afraid to add anything else to my system so I’m wearing wrap-around icepacks and taking it easy until I speak with the doctor. Hopefully when I speak with Lipid Doc, who has been out of town, he will tell me enough is enough and try to get me on the new miraculous injectable cholesterol medicine.

I feel a responsibility to share what I’ve experienced and learned about the side effects of statins, for the benefit of those who don’t know of the link between statins and muscle weakness and pain. I can’t help wondering how many people think they are just getting old or arthritic and simply accept their situation without ever considering they might be experiencing drug-related negative side effects. I cannot accept going from walking many miles each week to creeping around gently to avoid additional pain that in my case started almost over night. I hope my experience will help those in a similar situation to question their medications as a possible cause. I know statins are life-saving for many people with dangerously high lipid levels and some, like my own brother, suffer no side effects at all. However, for those who do, there may even be new ways to lower cholesterol in such dangerous situations without the negative side effects. I encourage people to discuss other options with their doctor and do some research themselves. Life’s too short to give up and sit it out due to medication side effects.

25 thoughts on “No More Statins for Me or Don’t Disregard Muscle Weakness if Taking Statins

  1. Oh man! I’m so sorry you’re going through all of that – I hope you and your doc figure this out sooner than later. ❤
    Diana xo

    Liked by 1 person

  2. Can’t wait to see if next medication solves problems.

    Liked by 1 person

  3. I’m glad you shared this story. When my mother was in hospice the nurses had her on major pain meds for the severe pain in her legs that only seemed to occur at night. She could not get any sleep without her pain meds. After reading about the various side affects of cholesterol medications, in this case Prevastatin, I removed them from her daily pill dispenser. Within a week, the leg pains were gone and she was sleeping again.
    So when it came time for me to start cholesterol reducing medications I started going through the same thing. I am on my 4th one, Crestor, and while it doesn’t cause the nighttime leg cramps like the other 3, I do have muscle weakness.
    Thanks for this story. I hope it helps others. The nurses caring for my mother did not believe me when I mentioned the connection between leg cramps and her cholesterol meds.

    Liked by 1 person

    • I’m glad your mother had you as her advocate. I hope you find something that works well for you.Thanks for reading and sharing your story.

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    • Hi again. Just wondering if anyone mentioned taking CoQ10 to you. I’ve been on it for several weeks now and my muscles and knees are feeling much better than they were with simply getting off the statins. I understand it’s helpful for some folks on statins who have the side effects. One of my friends said it works wonders for him. It seems that statins not only stop cholesterol production they also lower your body’s levels of Coenzyme Q 10 and as levels go down statins side effects increase. That’s why the muscle aches, fatigue, and weakness happen. Hope you feel better.

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  4. Side effects are BAD. I have a good friend who had a near heart attack and his doc put him on statins immediately. It took longer than you, but within a few weeks he had horrible shoulder and arm pain. Off the meds, pain went away. Fortunately for him, the doc found a statin that gave him no painful side effects. I hope the new injectable med works for you!

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    • I’m happy to say, my knees are shrinking a little each day. The left is almost normal. Got to keep icing and elevating the other but I’m hopeful I’ll be back to normal in the near future. Then comes the day of deciding if I’m now so afraid of side effects, I’m starting to fear the injection. Paranoia perhaps. Doc says insurance may require Zetia first and I quake at the thought of trying anything else. It feels so good to stop feeling bad. I’m glad your friend is doing better and found a happy solution.

      Liked by 1 person

    • I forgot to tell you I’m now taking CoQ10 to help with the pain and weakness. Rebuilding strength. It’s helping. So, if you know anyone else on statins with these issues, many docs put patients on this supplement to prevent or help with side effects and have good results.

      Liked by 1 person

  5. Lisa, what a challenging situation to be in. I am glad to read (in the comment above) that your knees are shrinking a big daily. But it’s still a conundrum. My brother tried taking statins and had terrible shoulder side effects. He just quit, but he doesn’t have your family history. I truly hope that the Universe assists you in finding something that will work without many side effects. Truly wishing you the best, Kathy

    Liked by 1 person

  6. I learned a few years ago that stations and my body do not agree. #We’reTheDeciders

    Liked by 1 person

    • I just told a few people in earlier replies about this. Just FYI Although I’m not on any statins and still waiting to see if I can take the shot, I’m now taking CoQ10 to help with the pain and weakness. Rebuilding strength. It’s helping. So, if you know anyone else on statins with these issues, many docs put patients on this supplement to prevent or help with side effects and have good results.

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  7. When I said in a comment that we all have so much in common…I had no idea of this post. Amazing. When I was about to turn 60, my doctor put me on Simvastatin, a mild dosage. I complained of muscle aches, he referred to my age and was not too concerned. I went off the meds on my own for a few months, felt better, but the LDL climbed, so I yielded and resumed the statins. With some premature deaths in the family history, and ample heart disease, he told me the “discomfort” is worth it to keep the numbers down.

    But I wondered. I stayed on until 2 years ago, when I told him I was going off the meds permanently. He suggested that I do a heart calcium test, and if there was no blockage, he wouldn’t be concerned about the rising numbers. (By now, I was up to 300 total cholesterol, which rang bells).

    My doctor retired. I am searching for a new practice and have yet to take the test. But right now, I am taking nothing but vitamins, getting outside daily for an hour walk, sleeping better than ever. I am grateful for the break from “medicine” and never felt better.

    I wish you the best results, Lisa.

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    • Thought you’d be interested to know the latest. I’m now taking CoQ10 to help with the pain and weakness. Rebuilding strength. It’s helping. So, if you know anyone else on statins with these issues or if you have to get back on them, many docs put patients on this supplement to prevent or help with side effects and have good results. Also, you may know all this already but my doc has me on two capsules of fish oil morning and night. I also take vitamin D3, turmeric capsules, metamucil, low dose aspirin. And, I’m supposed to really watch my sugar/carb intake due to high triglycerides. And now I wait. Oh and now that my knees are feeling better, walking daily.
      Glad you are feeling better. Ya know, I’ve said, if I’d never taken blood tests, I wouldn’t know I have this problem. Darn! Oh, and the calcium test is a quick and easy test. I’ve had two so if you can do that, it’s worth it for answers. Keep me informed if things change.

      Liked by 1 person

      • Thanks for the calcium test tip, Lisa. I was on CoQ10 for quite a while. It helped a bit, but not enough. Glad your knees are better and you are more mobile. Hang in there. Thanks for sharing all of your experience with this stuff. ❤️ Much appreciated.

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  8. If no one has suggested this, you might try cholestyramine. I was put on statins a few years ago and in a matter of days, my joints and legs were aching so bad I could barely climb stairs and I could not go out walking. I was given a one week break and tried on another – same result. (Meanwhile, I’d had great results with garlic, no-flush niacin and omega fatty acids, but now I was told that wasn’t enough.) So we tried Cholestyramine – it’s a powder and an alternate to Questran which has aspartame in it which I will not take. This has sugar to sweeten it. It has not brought cholesterol down like a statin would, but it’s far less noxious, and in fact, I’ve had no side effects at all. However, even my dr. feels I may not need it at this point … I do everything in my power to not take drugs. Sometimes it’s necessary, true, but I lean as much as possible to supplements, vitamins and food to try and get me right.
    My recommendation for you – seek out a D.O. rather than an M.D. – they are much more holistically oriented and will try a whole lot of things before putting you on a “real” drug. Good luck!

    Liked by 1 person

    • Thanks so much for all this information. My knees are almost back to normal now that I’m off statins. I too take many suppliments and have added COQ10 which is helping the knees. Thanks again for all the helpful information.

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      • COQ10, BTW, is essential to anyone taking statins, as statins destroy it. We lose CoQ10 naturally as we age, but statins destroy it. There’s a tremendous amount of info on that. I take Source Naturals Ubiquinol which is the active form of COQ10 – good brand for purity and highly recommended. Check out any vitamin/supp. purchase on vitacost.com for great discounts, too.
        Sorry about the squirrel (in other post.) I can relate. Just this morning, I saw one of next door’s cats cornering a bird and I disrupted the killing by calling him. (He’d rather have attention than a bird, luckily, and the bird got away. 🙂

        Liked by 1 person

  9. You’re welcome. Yes, nature can be hard to watch. Especially when the one of the cats next door brings me a gift, which is sometimes still alive … yech.

    Liked by 1 person

  10. I knew someone this happened to and it scared me to death. I am adamantly opposed to using them because of it. Since I already have a muscle disease I knew it would be a huge risk. This disease runs in my family so I worry about others in the family using statins. I know of someone who had a similar response to the antibiotic cipro and he ended up tearing both of his achilles tendons. Some meds are just not worth the side affects or risk.
    I’m so sorry those side affects happened to you. Did you regain full strength?

    Like

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