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MY STATIN STORY
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Flowerbud64 posted:
I'm 64 years old and have had high cholesterol for over 35 years. Cholesterol wasn't checked or discussed much way back then; so, I could have had it before then. Now it's highly discussed and debated. I do believe statin drugs help most people; but, for some, and I am one that can't take some of them and can't tolerate them, that there is truth in these fact even if studies don't prove them.. The first statin I tried was Baycol (which was taken of the market because of some deaths that ocurred ) My blood test results were still barely within normal limits; but, my doctor took me off of it before they took it off the market because I reported I was tired all the time. The second drug I tried was Lipitor. That drug gave me leg pain after 3 weeks. Tricor, Zocor and the list goes on all gave me leg pain shortly after taking them. I tried these drugs over a ten year period. All together I"ve tried 12 statins and all on the lowest dose. Crestor was the drug that effected my liver. I never felt so bad in my life; but, I kept taking it; although I couldn't take Crestor more than 3 weeks because I was so weak I wouldn't have been able to walk into the hospital to get the blood test. My doctor called me and told me to stop taking it immediately because two liver functions were elevated; but, she said it worked and lowered my cholesterol really low. It took me three months to recover from that one. I stopped trying for 5 years; but, from the urging of my doctors to take a statin I decided to try Lipitor again. I heard from friends that the pain will go away with time. My doctor says and I quote "They should put statins in the water supply". So, you know where his thoughts are about statins. To make a long story short. I took Lipitor for two years. I had constant muscle pain, muscle weakness, joint pain the first year and then in the second year to accompany that I had memory loss, (short term and long term) and confusion. I couldn't even remember what I was doing from one minute to the next sometimes, I got confused and lost while driving, burned 10 pans last year because I forgot I was cooking, missed paying bills, missed appts, couldn't find words in a conversation, many times I would get ready to go somewhere and get out to the car and forget where I was going. Forgot my wedding anniversay date, my passwords....etc...and on and on This came on slowly; so, at first I thought it's because I'm getting older. I was blaming my muscle pain and memory loss on my age. I did report my muscle pain to my doctor; but, not my memory loss because I thought that was my age and my doctor did give me a test for RA which came back positive; so, again I thought at least the joint pain was arthritis. I happen to check the FDA website about new statin warning when they came out with the type 2 diabetes warning and low and behold there was also a memory loss warning. I thought, just maybe I'm not having dementia, memory loss and confusion because I'm old; but, maybe it's the statin. Also, right before I stopped my statin I had a brown tinted urine which is not a good sign while taking statins. I should have gone to the doctor when that happened because that could have been serious or it could have proved that I couldn't tolerate Liptor. My doctor was taking blood tests all through this period. I stopped the statin drugs 11 months ago on my own to see if all this pain, weakness and memory loss would go away. After a week of not taking the statin drug my urine was normal. I have had NO MUSCLE PAIN, NO JOINT PAIN, LESS MUSCLE WEAKNESS AND MY MEMORY HAS COME BACK and an added benefit was a sense of well being or lack of depression. I didn't even know I was depressed until I stopped the statin. I just wanted to tell my story to let some people out there know it's not all in your mind and maybe it's only 1% of the people on statins that can't tolerate them; but, when it's you, it's important and you're not crazy as some doctors seems to imply.
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iride6606 responded:
You are absolutely correct, it doesn't matter how small the percentage of risk of a side effect is if it's you. In almost every drug there is a percentage of side effects. If you look at the safest drugs on the market, there will always be some that can not tolerate them. It's too bad that there isn't a "one size fits all" treatment option.

I am happy to hear you are feeling better. I'm sure you know there are other ways to help control your cholesterol levels without statins. Just work closely with a medical professional you are comfortable with to find a better treatment option for you. If you don't think a doctor is taking you serious, go find another. There are plenty of choices of doctors with plenty of specialties. Thanks for sharing your story!
 
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bobby75703 responded:
Very powerful story on your experience with statins Flowerbud64.

I think its more than 1% that experience muscle weakness and memory decline. Although the exact number is not known and a subject of debate. Some physicians report as many as 20% of their patients experiencing statin side effects from one degree to another.

Thanks for sharing.
 
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bobby75703 responded:
Flowerbud, you may be interested in the following polls of statin users on Mediguard. They use comprehensive pie charts to graph real world feedback from statin patients.


https://www.mediguard.org/medication/side-effects/lipitor

https://www.mediguard.org/medication/side-effects/crestor

https://www.mediguard.org/medication/side-effects/zocor
 
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Frankie1313 responded:
I too can not take statins. I take red yeast rice daily at night and my chlosteral stays within reason.
 
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suki65 responded:
I have also been put on statins April 2011 i have been on 3 different ones had lots of side effects from tingling feet,memory loss,muscle aching ,bones sore on elbows and knees ,very upset and shape loss on my thighs .
All this is from statins as i am only 47 but started to feel like im 80 ,now i have come off the statins but taking a herb called policosanol with coq10 ,which should have been prescribed to me while i was on statins .
policosanol with coq10 has not had any side effects with i have been taking them 4 months and looking good
 
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iride6606 replied to bobby75703's response:
Yet they have a higher or the same satisfaction rate as Acetaminophen and Ibuprofen.

https://www.mediguard.org/medication/satisfaction/acetaminophen

https://www.mediguard.org/medication/view/ibuprofen

What does that tell us? There is no Internet or polling data for those who have had a positive experience with these drugs. We don't use data from sites like this when we compile data as there is no blind polling of statin users so results are overstated. The satisfaction rate would imply that users are more satisfied than the comments would be perceived.

We all need to look a little deeper.
 
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iride6606 replied to Frankie1313's response:
Red yeast rice is a natural statin with the same molecular make up. You are probably just getting a lower dosage. I'm glad it works for you!
 
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billh99 replied to bobby75703's response:
I noticed that for Zocor it said "25% of patients experience side effects that are extremely or very bothersome on Zocor".

But that only 22% experienced any side effects.

Wonder how it is possible for more people to have serious side effects than those that have any side effect.
 
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iride6606 replied to billh99's response:
It's easy to explain, it is typical with the paradigm in these types of sites. If you ran an ad that read "go to XXX.com and give us your opinion on statins" you would pretty much get negative responses. How many people that have no issues with statins even look at info or papers about statins, Out of site out of mind. However, if you have had a negative experience you would be more motivated to give your comments. These sites are sounding boards for those that are rightfully frustrated and the difference between the numbers you mention show would suggest they are speaking from frustration or are plants to discredit the drug. That is why researchers avoid these sites at all costs.
 
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bobby75703 replied to billh99's response:
Bill, I noticed that too. Obviously its math error.

iride, even away from internet poll sites, several physicians are commenting roughly 20% of their patients on statins are experiencing side effects.

At my Doctors office I asked the Nurse if the Doctor prescribes statins. Her reply? "If they can tolerate them."
 
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bobby75703 replied to iride6606's response:
iride, I understand what you are saying, people will voice themselves if they have a complaint. However I have found other drug reviews that were very positive. So happy campers will sometimes share their experience.
 
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billh99 replied to iride6606's response:
That explains why their numbers are higher than those reported in trails.

However, by logic, anyone that reports a major side effect also has a side effect. Therefore those having major side effects can't be higher than those having all side effects.

My guess is that the terms are simply not defined nor is there any kind of checking in their data entry.

But end results are the same, the numbers are meaningless.
 
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bobby75703 replied to billh99's response:
Side effects from drugs ( not just cholesterol drugs) are often found to be higher in clinical practice, than what was reported in trials, especially if the trial is industry funded.

There will always be a difference between trial results and real world results.
 
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iride6606 replied to billh99's response:
Bill, you are correct. It is a case of garbage in garbage out, not a math error and not an oversight. It is a poorly defined question that is designed to solicit negative responses. It is obvious when you see that Lipitor has a much higher satisfaction rating than Tylenol or Advil.

In the end it comes down to the data in controlled long term trials and what your own experience is.


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