Opinions Please -- Am I crazy?

I am so glad you brought this up. statins give me such bad cramps, sometimes my entire body cramps. Although I am retired, I still dance (former ballet dancer here) if I extend my leg - and heave forbid I should point my foot - the cramps are visible! My PCP suggested a smaller dose, every other day. Almost instantly, the cramps came back. Someone suggest talking to a pharmacist and since those folks really do know their stuff - I’m gonna do that in hopes I can get some alternatives to suggest to the PCP. I have an HMO, so I can’t really talk to their pharmacist but the one that fills my partner’s Rx’s is awesome.

1 Like

to tell you the truth, I believe that it’s far better to consult with a really professional doctor, who will understand your needs, desires and will just listen to you, so, just try to find one and consult with him/her)

1 Like

I take Lipitor (never had any side effects) for 10+ years now, and in the past year have added Zetia. Zetia in combination with Lipitor resulted in a marked drop in bad cholesterol levels.

1 Like

As we all know, everyone reacts differently to drugs… even insulin! I, personally, will never take a statin again. I was on Simvastatin for a while when I started to get muscle aches. Each day, I felt worse until I could hardly get out of a chair. I ached all over, could not lie down to sleep, yet felt exhausted all of the time. Long story short, after over $30,000 worth of tests at Mayo Clinic, I was diagnosed with dermatomyositis, an auto-immune condition where the auto-immune system starts to attack and destroy the muscles in the body. Like most auto-immune diseases, doctors are not sure of the cause but some evidence exists that suggests statins could trigger the condition, especially if the patient has other auto-immune diseases, like diabetes. Conclusion: I would never recommend a statin for anyone. I watch my diet, exercise daily, and my cholesterol is near but not over the top of the normal range. I have been diabetic for 54 year, now have dermatomyositis, and am in my mid-60s. I told my doctor that with all that going on, I doubt that high cholesterol will be the eventual cause of my demise. Good luck with your decision.

Sorry to read about your troubles, @SherryAnn. Are any treatments for dermatomyositis helping you?

I’ve read about the “washout” periods used in many of the drug trials that led to regulatory approval of statins. During this initial time, participants who exhibited any “side effects” were eliminated from the cohort that provided the basis for the drug study. I remain astounded why this culling of the cohort was allowed during a “zero period” was ever justified.

Thank you for your kind words, Terry4. Yes, the wonderful thing about Mayo Clinic is that they will not let anyone leave without a treatment plan. One of the blood work results showed that I could not take the “standard” drug to treat dermatomyositis, so the great doctors there found one that would work. I started on a rather strong dose of Prednisone for almost a year just so I could get back to normal movement without excruciating pain, coupled with Azathioprine (an autoimmune system suppressant) to keep my body from attacking the muscles. I am off Prednisone now, but I will have to take Azathioprine the rest of my life. I have had one “flare up” which caused me to go back on Prednisone for a while, but all is good now. I can lead a normal life with no pain but will always have to be aware that a flare up could happen at any time. Ideal? No, but I am thankful that I was able to get a good diagnosis and treatment plan. However, the fact remains that statins could have been a contributing factor to me developing dermatomyositis to begin with. That is why I caution all diabetics to just be informed of the possible complications from taking statins. Everyone must make his or her own decision about drugs. I choose to never use statins again.

5 Likes

This is wonderful to read! I had them on my short list of possible places to go for treatment, but the distance seemed too great for me and I opted for something closer - as in four hours travel vs the 15 plus hours. Still, should I need more advanced care it’s nice to hear comments like you’ve made above!

This is also wonderful to hear! Thank you so much for sharing this information!

Mayo Clinic is about six hours away from our home, and I would not hesitate to travel that distance again. Many years ago, they saved my mother’s life with heart surgery. She had an extremely rare condition and was told that only six surgeons in all of the USA were experienced in the surgery. One was at Mayo. (She was 74 at the time and just passed away this year at age 96.) Last year, a surgeon in our hometown wanted to do back surgery on my husband. My husband went to Mayo who tested him and discovered that most of his pain was NOT from his back but rather was from his piriformis muscle. They treated him and alleviated the pain. Back surgery would have been the wrong decision and would not have alleviated his pain. When I went to Mayo with my aching body in 2013, I had a diagnosis of polymyositis and the local doctor wanted to put me on a certain drug. The Mayo doctors did tests which proved I had dermatomyositis and that the drug my local doctor would have prescribed would NOT have reacted well with my body. So do I believe in Mayo? You bet.

3 Likes

Maybe @sweetgal88 should read ^^^ by @SherryAnn for her unknown, painful illness. Seems like the Mayo Clinic may indeed be able to diagnose pain issues.

3 Likes