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Important information about statins that I’m going to ask my doc about

Posted by Barb @amberpep, Aug 10, 2020

Just a bit of information I discovered last week. One of the side effects of taking "simvistatin" is temporary memory loss. It is the only statin that has this effect. I am going to talk to my .doctor about stopping it, with his guidance of course. I have had some short lapses in memory .... forgetting part of my phone number, etc.

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gussie | @gussie | Nov 2 10:38am
In reply to @missey "I couldn’t take statins at all The pain and immobility was horrendous. The doctor put me..." + (show)
@missey

I couldn’t take statins at all The pain and immobility was horrendous. The doctor put me on Repatha EpiPen, and no side effects. It has brought my LDL level down to about 20 now! Amazing.

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My cardiologist is thinking of putting me on Repatha. I don't know if Medicare covers it.

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1 reply
missey | @missey | Nov 1 9:16am
In reply to @bijouxb "I was put on Atorvastatin, and in less than 2 months I developed: (a) TERRIBLE muscle..." + (show)
@bijouxb

I was put on Atorvastatin, and in less than 2 months I developed: (a) TERRIBLE muscle pain in both feet and legs; (b) partial tears in both my tibial tendon and plantar fascia; (c) sudden onset of Stage II CKD; (d) Pre-Diabetes; and (e) brain fog from hell. Statins almost killed me. And now, I am being told that "if I do not take statins, I risk death" because my cholesterol is NOT good. So I am being told to pick between one hideous disease that might kill me, or the absolutely certainty of Kidney Failure and Diabetes - that will also kill me, but not before it turns me into a Dialysis patient, and THEN kills me.

This is 2020. There have to be alternatives to the type of medical care that says "We'll fix (sort of) this problem, but the cure will kill you" type of scenario I am facing. Or put another way: right now, I have one hideous disease that might kill me. If I take Statins, I'll have three hideous diseases that will kill me. Because they don't "cure" heart disease. They just slow it down. Supposedly. And I have also read that there is little evidence of an increased life span from statin medication. Especially for women. The Statin Pharma Lobby is a really powerful organization. Biggest moneymaker in history. And that is fact.

By the way, my cholesterol was perfectly normal. Then I hit Menopause and Holy Mother of God. And I have discovered - the hard way - that the medications doctors are fond of giving to anxious patients (especially women) cause my cholesterol to surge even higher. Prozac was a biggie. 100 points. In less than a month of usage. I stopped the Prozac and that 100 point increase disappeared. I have since watched my numbers from BEFORE cholesterol was a problem to now. I have also been able to see what triggers spikes in cholesterol AND the sudden onset of potentially debilitating disease of other organs. I stopped taking Atorvastatin because I was practically crippled in less than 2 months. My "out-nowhere" Kidney Disease disappeared, as did my Pre-Diabetes. Not so lucky with the muscle pain, but it is getting better. I'll never be a power-walker ever again, however. My days of hiking are over. And it hurts to lose function like that. Not being able to really exercise is just as hard on a person's heart as the dreaded "Cholesterol" debate. I still wonder how a substances that is essential to healing the body (Cholesterol) has been so demonized. Isn't it inflammation to blood vessels that Cholesterol is generated to try and repair damaged arteries? Input from cardiologists without skin in the game would be really helpful.

What are patients like myself supposed to do? It would appear that we are damned if we do, and damned if we don't. I live with someone who has End Stage Renal Disease and has to endure the rigors of dialysis thrice weekly, and I will NEVER allow that to happen to me on purpose. It is a living hell. You never "get used to it" and your life, plans and EVERYTHING that matters(ed) to you take a back seat. And being told these are my only options are not sitting well with me.

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I couldn’t take statins at all The pain and immobility was horrendous. The doctor put me on Repatha EpiPen, and no side effects. It has brought my LDL level down to about 20 now! Amazing.

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1 reply
njx58 | @njx58 | Oct 26 6:07pm

I just started Rosuvastatin, but it's the lowest dose (5 mg), so hopefully I won't have the same experience. Good to know there are other choices.

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janieel | @janieel | Oct 26 3:26pm

I took Simvastatin 20mg for 14 years until last November when my doc switched me to Rosuvastatin 20 mg which is a bit more powerful (My LDL had gone up to 139). Over the winter I started getting pins/needles my fingers and toes. It got progressively worse until I was in agony and could barely walk. My feet also developed numbness along with the pins/needles, as well as numbness in my fingertips. The tip of my nose also had tingling and numbness which later was explained to me that all most distal nerves were affected.
Besides my familial hypercholesterolemia, I have always been a healthy and active person. I thought and thought about what could be causing my symptoms I finally thought that the only lifestyle change was my statin. I looked it up and bingo! I saw that Rosuvastatin could cause neuropathy. I contacted my doctor and showed her what I had found and told her I was going off the Rosuvastatin. She sent me for a slew of tests and nerve conduction studies (which were NO fun!). It was determined by a neurologist in Boston that I indeed developed Small Fiber Neuropathy (SFN) from Rosuvastatin. He assured me that over time my nerves would heal themselves and I’d be back to normal. Slowly I was able to walk, as well as use my hands again to pick up cold objects that I couldn’t with the SFN. Cold bothered the nerves in my fingers and most of my fingertips were numb. My feet, ironically, were susceptible to hot. My toes would be red and swollen and I had to sleep with my feet outside the covers.
I’m happy to say that it’s been 5 1/2 months since stopping the Rosuvastatin and I’m FINALLY back to normal, about the exact same time I took the Rosuvastatin. Hands, feet and nose are 100% fine.
Knowing I was not going to be on any statin until I healed, I made sure I ate extremely healthy! I didn’t want my numbers to get worse. Well wasn’t I surprised when I went back for my blood work and my total cholesterol was 359 and my LDL 240 in 5 1/2 months time! (My HDL was 94 and triglycerides 126, which are within normal range). My doc immediately put me back on my first statin, Simvastatin, since I had been taking it for years without complications. I’m hoping that’s the way it stays! I’ve only been taking the Simvastatin for 4 days now, but haven’t felt anything weird yet.
Moral of the story is 1) I’m a classic case of FH, familial hypercholesterolemia where left unchecked, my LDL and total cholesterol will go crazy high and
2) I can’t take Rosuvastatin because of the side effects I encountered with it.

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chuckiepoo1 | @chuckiepoo1 | Jun 27, 2023
In reply to @cantab "I am taking 25:1 citrus Bergamot extract with 50% polyphenols 1000mg with black pepper. Manufactured by..." + (show)
@cantab

I am taking 25:1 citrus Bergamot extract with 50% polyphenols 1000mg with black pepper. Manufactured by Eleva Nutrition. Natural Formula is Vegan and Non-GMO — 180 Capsules. Bought from Amazon --- https://smile.amazon.com/gp/product/B094DVDWW2/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Read the info for more details.

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Cantab,
Your post is most interesting. Have you had any positive results from taking Bergamot? Thanks.

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adr | @adr | Sep 21, 2022
In reply to @billjudis "Thanks! I have not taken the statin (Crestor) again. Just had my heart calcium score done..." + (show)
@billjudis

Thanks! I have not taken the statin (Crestor) again. Just had my heart calcium score done and it was 0! It was at 0 about 10 years ago too...I don't know what this means for taking statins but I will find out from my cardiologist. Interesting stuff...

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I'd be interested to know what your cardiologist says about the score and your need for statins.

According to the info online, that appears like a really good number! Can't get lower than zero!

So are right, interesting stuff. Sometimes the numbers don't show the whole pictire. Good for you for investigating furthur.

Keep us posted.

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billjudis | @billjudis | Sep 21, 2022
In reply to @adr "I was told the side effects are dosage dependant. So the lower the dose, the less..." + (show)
@adr

I was told the side effects are dosage dependant. So the lower the dose, the less side effects. Also if it really bothers you, you can ask for a change to a different stain, or if you can take it less often. Your doctor will be able to work with you. Mine did.

I was against statin for years! In fact terrified of them! But at 64 and a history of high chokesterol, I decided to give it a go too. My doctor said I could stop them if the statin wasn't for me, and the side effects would be reversable. When I see my cardiologist, I am going to ask for a coronary calcium scan to see if, and how much blockages I have. Simple test. Noninvasive. Lots of information from that one scan.

Keep us posted.

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Thanks! I have not taken the statin (Crestor) again. Just had my heart calcium score done and it was 0! It was at 0 about 10 years ago too...I don't know what this means for taking statins but I will find out from my cardiologist. Interesting stuff...

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1 reply
Marta | @interest | Sep 17, 2022
In reply to @adr "I was told the side effects are dosage dependant. So the lower the dose, the less..." + (show)
@adr

I was told the side effects are dosage dependant. So the lower the dose, the less side effects. Also if it really bothers you, you can ask for a change to a different stain, or if you can take it less often. Your doctor will be able to work with you. Mine did.

I was against statin for years! In fact terrified of them! But at 64 and a history of high chokesterol, I decided to give it a go too. My doctor said I could stop them if the statin wasn't for me, and the side effects would be reversable. When I see my cardiologist, I am going to ask for a coronary calcium scan to see if, and how much blockages I have. Simple test. Noninvasive. Lots of information from that one scan.

Keep us posted.

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Yes, Coronary Artery Calcium test is important.
If score is higher than normal, LDL ( bad Cholesterol) has to be 70 or below, even if cholesterol total is normal.

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Marta | @interest | Sep 16, 2022

Adding, of course diet is very important and I still eat very healthy , but that alone isn’t sufficient in my case. That’s why I take a statin.

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adr | @adr | Sep 16, 2022
In reply to @interest "Hello everyone. I dread taking meds but statins are a must. My lifetime of low fat..." + (show)
@interest

Hello everyone. I dread taking meds but statins are a must. My lifetime of low fat / non processed foods diet doesn’t help much if at all, high cholesterol is in my DNA and I have no choice but to take a statin.
I was on Atorvastatin , no side effects, but 3 months later labs and liver results were all off!
Was switched to pravastatin and I’m okay
There are many choices of statins, and if one has side effects doctors prescribe different until they find the one that agrees with each patient.

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Good advice!

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