Cholesterol and Statins causing joint pains - need advice

Type 1 and LADA
1

When I was diagnosed (35 years old) with Type 1 (LADA) diabetes 2 years ago I started seeing an Endocrinologist office. After the first visit I’ve been seeing a Nurse Practitioner for my visits.

NOTE:

  • I don’t have any known joint issues at this time.
  • Average A1C last 2 years 5.4%
  • I did go to a heart doctor, EKG, Blood Test, Stress Test all Good

Since the first visit he didn’t like my Cholesterol level and wanted me on a statin.

My starting LDL was 140.

He started me on 20mg crestor daily. I came back in 3 months with an LDL of 82.

As I was leaving I mentioned my hips hurt and I feel like an old man. He said it was the statin and I needed to stop taking it. (I didn’t make the connection on my own because I wouldn’t call it muscle pain, it feels like sand in my joints.)

I started taking 5mg crestor per-day and had a LDL of 99 3 months later. Still had the joint pain.

I stopped all statins for a while and the pain went away and my LDL was back up to 150.

I tried zocor, same pain.

I tried 4mg Livalo, same pain

Now when I take 2mg Livalo on Monday/Thursday’s I don’t have the hip pain. I do some times have a little joint paint but I don’t know if its the statin or just my physical activity/age.

I just tried for 3 weeks to take 3, 2mg Livalo per-week and got the hip pain right away (feeling it now).

I tried (Zetia) Ezetimibe and had the worst hit pain I’ve had. I also hurt my hip just getting out of bed, it took about 6 weeks to get better the whole time I had to stay off cholesterol medications.

My provider wanted to get me on a PCSK9 Inhibitor but insurance won’t cover it until I’m 40. Also there are no FDA approved trials for it to improve cardiovascular outcomes. So it might help but its not proven to help yet.

I am healthy and active so I’m not sure what to do. I don’t want to stop the statins build up plaque and die of heart disease. I also don’t want to destroy my joints and become inactive/unhealthy for that reason.

Anyone else have experience with this they can share?

I could try more statins but I expect they will be the same. The fact that a non-statin Ezetimibe caused me so much trouble it make me wonder if the lower LDL causes the problem and not the medication?

2

Have you tried to work on it from a dietary standpoint? Reducing saturated fats, and making sure you have a good ratio of unsaturated fat to saturated fat in your diet?

How are your HDL and your total cholesterol numbers? The LDL-HDL ratio and HDL-to-total cholesterol are other important measurements to look at.

Also, the type of exercise you are getting makes a difference. Less intense physical activity can help increase HDL (which is good). But more intense exercise can reduce your LDL, which is even better.

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The generic Crestor gave me neuropathy. So did Zetia, but the neuropathy went away when I stopped taking Zetia. I took a small dose of the generic Crestor for several weeks and got neuropathy again. I have been off of it for well over a year and I still have neuropathy. I am devastated. 61 yrs of type 1 and no neuropathy at all ever. Of course, when you research side effects, neuropathy is listed for some people. If I had known that neuropathy was a possibility, I would never have tried statins.

With other statins I had joint pain. I had such bad hip pain with PCSK9 that I stopped after one injection.

I hope that you can make a decision about what you can do next. The joint pain can be very serious. I am so sorry that you are dealing with it.

I am on a low fat vegan diet which lowered my LDL a bit, but not much. I also exercise for an hour a day. For some people a very low fat diet really lowers their LDL. Good luck to you. Please let us know what you decide to do.

4

My HDL is pretty consistent around 68.

Total Cholesterol is around 200 depending how much statins I take

Ratio is 2.4 - 3.5

I haven’t done anything significant with my diet but in general I don’t eat bad. I eat a lot of fruit and don’t eat much unhealthy fat.

No fast food, no fried food etc…

My doctor said some people just have a higher LDL (Genetic). I’m sure I could drop my LDL some via diet but honestly I feel like I deprive my self so much already because of diabetes. No ice cream, desert, no snacks, no soda etc…

I walk the dog 3+ times a day and go out side to play with my kids after work so I’m fairly active. I also run on the weekends.

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Thank you this is the exact feedback I was looking for. With statins everything talks about muscle pain but for me its all joint pain.

It feels like I have sand in my joints, like I’ve aged 50 years over a few days.

Because the zetia and statin both cause the same pain I’m suspicious its not a statin issue but a LDL being lower issue. Maybe some peoples bodies need that LDL?

I was concerned if I took a PCSK9 would I been in extra pain and be stuck with it since its a weekly injection you can’t undo. You’re stuck riding out whatever effect it has over a week plus.

I’ve read disccusions about if LDL its self is bad or is it really depend on the particle size of the LDL. The idea being small particles get stuck in artery walls but larger particle LDL does not.

This is one article talking about particle size.
The Diet-Heart Myth: Why Everyone Should Know Their LDL Particle Number

Should you seek advanced cholesterol testing?

Cholesterol confusion and statin controversy

I haven’t seen really conclusive answers on this but I’ve seen is discussed. I may just need to go to the cardiologies again to get their thoughts. I don’t think my Diabetes Nurse Practitioner knows enough about these things.

I remember the first day he told me he wanted me on a statin, I said what are the side effects. he said “You don’t die”.

6

Chris,

I suggest you think about seeing a cardiologist. I am 100% sure that my cradioloigt got the statins right and she is not guessing about the right way to do it. Now she is tough. She wants it at zero, (I am teasing), but she has really been good for me.

rick

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You need to weigh your risks.
I do not tolerate statins but then I don’t really need them even though my doctor out me on them.
I got stiff hips and shoulders, which still persists todsay even though it’s been 10 years since I was on them but they also give me intestinal cramps.
So I’m off statins for ever. I have no reason to take them, the side effects are far worse than the benefit.
However you need to weigh your own risk assessment.
Others have mentioned using diet to manage it, I eat unsweetened oatmeal and it really dropped my total cholesterol and running has raised my Hdl.
Currently off meds my total cholesterol is around 160 and my hdl is usually in the 70s.
At worst my cholesterol hits 190 and 65.

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I think I might do an experiment. Stop the statins for the next 3 months until my next blood panel.

I’ll try eating oatmeal for breakfast. I’ll also replace my evening snack (english muffin with peanut butter).

Personally if I could have an LDL around 115 without statins I’d be fine with that.

When I take 2mg Livalo twice a week that’s about as far as I can get my LDL down with out lots of joint issues. I suspect if I stop the statins with in a month my joints will be feeling good again.

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I had been taking a statin for quite some time, and it seemed fine, with LDL about 75, but then I noticed more generalized joint pain, problems sitting, aches in my hips joints and pelvic muscles. I raised this with my doctor, so we stopped the statins, and it almost immediately decreased significantly. There were still some lingering issues but asked to go back on, but stupidly, my endo prescribed Crestor, the one with the most frequent complaints of myalgia. Again, problems started reappearing.

I did some research, and once the aches had completely subsided, I asked her to prescribe either of the two safest statins, Pravastatin or Fluvastatin, the least likely to cause myalgia. I’ve been on Pravastatin for about a month with no issues, but not sure how my LDL looks. I’ll get tested in about 2 months, and hope to report back.

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I just want you to know that some of us have tried statins and have rejected them for reasons other than effects like joint or muscle pain. I don’t have an MD or PhD after my name but I can read and think critically. I have extensively reviewed the medical literature and followed medical discussions at conferences and on YouTube, so my personal judgment on this issue is well informed. My conclusions only apply to me. I respect differing conclusions made by others. It’s your call, of course.

My biggest objection to statins is that they can not compete with sincere, persistent and comprehensive lifestyle interventions. I think doctors are cognizant of the efficacy of lifestyle changes but they despair when their patients do not give them due efforts.

What am I talking about with lifestyle interventions? To start with it means a way of eating designed to minimize hyper- as well as hypoglycemia, a high percentage time in range if using a CGM.

It also means avoiding foods that inflame the body, like the industrially produced “vegetable oils” like canola, safflower, sunflower, and corn oils. Including more Omega-3 fatty acids, prominent in fish, in your diet helps reduce inflammation. Conversely, reducing the amount of Omega-6 fatty acid found in foods like grains provides benefit.

One potent and overlooked lifestyle intervention is getting a good night’s sleep almost every night. This means paying attention to sleeping during the same hours every night, whether weekdays or the weekend. Setting an alarm to remind you about your bedtime is a good practice. Keeping your sleep environment cool, like 65 degrees F, quiet and dark. Measuring the quality of your sleep with various apps and hardware can really help you learn about sleep.

Exercise, as most of us already know, plays a key role in overall lifestyle interventions.

Everyday mindfulness practices play an important role in health. Mindfulness can take the form of meditation, breathing exercises, prayer, or playing a musical instrument and singing. Mindfulness soothes the parasympathetic nervous system and its central player, the vagus nerve. Laughing is also a great restorative to the nervous system.

Many of us are overstimulated by demands of work and family and this means constant provocation of the sympathetic, fight or flight, side of our nervous system. Unfortunately, many people remain stuck within the sympathetic nervous system for way too long. These two systems complement each other and mindfulness exercises can restore that essential balance.

Many other things contribute success under the lifestyle heading. Helping others and expressing gratitude quickly come to mind.

While I believe that statins can give some marginal medical benefit, I don’t think it’s in the reduction of LDL cholesterol but instead in its so-called pleiotropic or anti-inflammatory effect often hinted at but not fully studied. The lifestyle effects I’ve listed above, when bundled together, provide huge anti-inflammatory benefits.

I believe taking a drug like a statin often causes the user to then turn her/his back on lifestyle changes thinking that the statin has sufficiently addressed the issue. The lifestyle changes I’ve listed above do not contain a long list of side effects like statins do. They’re free and available to anyone who chooses to use them.

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I was advised to begin statins earlier in the year after CAD diagnosis following heart studies and an angiogram.

My cholesterol panel is normal (better levels than those recommended by Health Canada).

I chose not to start statins as I don’t believe lowering already good LDL levels will offer any improvement in outcome. I also choose to believe CAD and blockages are caused primarily by lifelong high blood sugars, something I’ve not had for the past 30 years.

I’d far rather risk the wrath of my doctor(s) than having to live with either irreversible painful neuropathy or serious and possibly debilitating muscle damage.

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The first time my doctor mentioned statins I asked him if I could change my diet / exercise. He laughed and said that it would barley make a difference and some people just need medication because they are genetically predisposed to having higher LDL.

I agree with the idea people should be encouraged to try to get it down first before resorting to medications.

I’ve seen statements like 90-99% of users don’t have side effects but I don’t think thats true. I think muscle/joint pains are not uncommon.

Personally I think its proven that if you take a statin your chances of cardio vascular issues/death are decreased.

I do think it’s not proven that its because the LDL is lower. It could be anti inflammatory effects or something else. Or it could be a sub-set of people taking statins are helped greatly and the rest are not any better off. But as a group the average number of deaths is lower.

Since diagnoses I’ve keep my average time in range to 95%. I’m looking at sources of saturated fat in my diet to see how much I consume and what I can cut out. I’m curious to try the oatmeal and see if that makes a difference.

Either way I told my wife this morning I’m off the statin’s for now. I’m staying off until my joints are back to 100% which I think will take weeks based on past experience.

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I’ve been taking pravastatin for years without issue and definitely fixed my cholesterol issues. I tried diet changes, with no success.

Strong feelings on both sides of the argument, but if it isn’t causing issues, I’ll continue to do it.

Also my dad with diabetes died at 40 due to heart disease, so I have a little extra incentive.

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I wish you the best of luck in whatever health strategy you use to prevent cardiovascular and heart disease. We could endlessly cite one study or another and we as two people with diabetes may not agree; the doctors do not all agree either. You are the person with skin in the game and your assessment of the incomplete scientific knowledge to date is the only one that matters.

Reviewing the medical literature is now possible with the access that the internet provides. It kind of reminds me of how the church in the middle ages placed priests in the role of explaining the Bible to the masses. At that time, few people could read.

The internet has now allowed us patients access to the medical literature and with some time spent reading, we no longer must depend on our doctors to interpret what the literature says.

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I have a similar family concern, in that the men tended to die early, while women lived long lives. It’s hard to tell how much is genetic, as several men were single, smoked, and otherwise made bad lifestyle choices. The grands (grandfather, great uncle) led active lives, consumed healthfully (not ideal by modern standards though), stayed married, and lived well until they died of ripe old age. Almost all of the men died of heart-related issues.

For statins, the case is clear. They are good. Regardless, if it’s a reduction in inflammation or LDL or both, it has positive effects, excepting side effects. Although I could make my cholesterol disappear by eating a low-fat ovo-lacto vegetarian diet, it would leave me with low HDL’s, and my spouse would undermine that anyway. She’s responsible for many of the positive aspects of my diet and care, but her diet preferences conflict with mine, so I choose to live more agreeably with her, maintain my health with a moderate diet, medication, and fitness.

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Although I agree that being able to access all these studies has been great for those capable of filtering the information to reach reasonable conclusions, many people don’t or can’t fully comprehend most of the published data, thus requiring guidance. If one can, one should be informed as much as reasonable, as well as keep a rational, skeptical eye on medical advice.

Doctors are subject to their own biases, outdated information, and corporate marketing. I certainly have stories where I had to make the correction to my care, increase/decreasing dosages (managing BP, orthostatic issues), suggest better medications (cholesterol side effects), insulin dosing (as we all do), suggest the proper tests for certain conditions (protein anemia, possible high plasma volume), and request a better CGM (Medtronic was a big marketer to that hospital, but Dexcom was definitely preferred)

That said, one person I know we help with her care, most often getting her better specialists. She lives in the suburbs, and my feeling is that it is harder to find good doctors, which would be true even in Manhattan, and is only worse in outer areas. She could not self- educate and reason to the same level, nor does she have the resources.

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All, I can agree with is that there is a large amount of controversy surrounding the use of statins and controversy surrounding whether it is important to have low LDL numbers. We all have to decide for ourselves what we are going to do. Different cardiologists have given me different answers. I have done a lot of my own research and have read different books and studies.

10 yrs ago after 50 yrs of type 1 diabetes, I suddenly needed two stents in my healthy heart. At the time I great control of my diabetes with a 4.7 alc. My HDL was 100, my triglycerides were in the 30’s, but my LDL was close to 200 on a very low carb diet.

Even though I had and have no retinopathy or neuropathies caused by diabetes, I had and have plaque in my arteries. I suddenly needed stents after 8 months of severe stress. My grandfather died in his 60’s from a heart attack. My dad had a slight heart attack in his 60’s, but lowered his fat in take and in his 80’s had an angioplasty procedure that showed clear arteries. He never took statins as far as I can tell from his medical records. Both of my parents died when they were 89.

Life as a diabetic while urine testing wasn’t good. My first A1c was 10. Luckily at about that time home blood testing became available and in the last 40 yrs my A1c’s have been 6.7 and under. The past almost 2O yrs I have tested as a non diabetic.

I have tried all of the statins and have had severe reactions to all of them. I can not take the injectable new drugs for cholesterol. My cardiologist recommends that I do what I can with exercise and a low fat diet. I am trying a supplement called CholestOff which he recommends and I have ordered an at home cholesterol test from China. I keep my BMI low. I am hoping that the supplement has lowered my LDL which last time I had it checked in Jan was 114.

I live with my fingers crossed, eat well and exercise. I hope to make it to 80, but could die sooner. Who knows. I try to live well every day.

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I have been a type 2 ,28 years. My ldl has been 100 or below all my years. I am thinking of discussing going on a statin ,micro dose when I turn 70. Good luck with joint issues. Nancy50

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I was like the vast majority of PWD. Blindly following doctor’s orders as though they knew everything. I was put on Lipitor initially and moved to Simvastatin - different doctor, newer drug. I was having horrible muscle pain but never associated the two until I searched Dr. Google for answers. I was blown away by how many people posted about the same type of problems I was having. My cholesterol was never that high, my LDL was ~ 100 most of the time and my HDL was 80 so I stopped taking the statin. The muscle pain went away but the numbers crept up slightly. I worked with my primary care doctor and moved to Crestor titrating the dose to the bare minimum to keep the numbers stable and avoid the side effects. So my regimen is 2.5 mgs every other day (when I remember). And the numbers have remained stable since I started.

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This stops my pains Ubiquinol. I take it along with all my rwgular diabetes meds. It also helps anothwe co-worker that takes statins. It’s worth asking your doc about it and trying it.