General Question

yesitszen's avatar

Have you gone off your meds?

Asked by yesitszen (1961points) January 18th, 2019

Specifically Statins.

Other stories welcome.

What was your experience?

Observing members: 0 Composing members: 0

49 Answers

Caravanfan's avatar

No. I trust my doctor knows what he is doing.

LuckyGuy's avatar

I don’t take many meds, fortunately. But, but when I have to then, Yes!
I am a horrible patient. I usually experiment to find the minimum dose that does what it needs to do. (Except for antibiotics. I take those exactly as directed.)
I carefully check the results from my annual blood tests. I found that half the prescribed dose did the job quite nicely.

chyna's avatar

Yes I have. They were giving me muscle cramps. Specially I would wake up with severe cramps in my calves and would have to spend an hour trying to walk it out. I quit them. My next tests showed high cholesterol levels. So I started taking them 3 days a week per my doctor. That worked for a while. I had good numbers. In early 2018 my cholesterol was up again. Doctor recommended 4 times a week. Remember, she new what the pills did to me. September 2018, still high numbers. I started taking them daily. Numbers were down but still a little over 200. For those that don’t know, cholesterol should be under 200.
This part is difficult to tell,but if it helps one person: I had a heart attack and on New Year’s Eve, just 3 weeks ago, they discovered I had a 99% blockage in my main artery. They put a stent in and I was back to work in 2 days.
I always considered myself healthy and in shape. My weight has always been good. If you do go off, just keep a very close eye on your numbers. Sorry for the long post.

JLeslie's avatar

Several months ago I started Zetia (not a statin, but a different class of cholesterol lowering drugs) and I started taking Lisinopril blood pressure medicine about 3 weeks later.

Within days of starting Lisinpril I had emergency level pain in my chest. It felt more digestive track than heart. I stopped taking everything. Also, I was having spikes in my blood pressure like never in my life! 170/110.

A couple of weeks later I tried Lisinopril again. Again ER level pain. I asked for another drug, and I was given Enalopril. Same pain problem. I just can’t take that drug class. The prescribing doctor didn’t seem to be taking me seriously so I went to my GP. She ordered an abdominal scan and wrote me a prescription for Losartin BP med. I said to her, “you think I have gall stones, but I know it’s the drug. I’ve tried it three times now, and already the pain is going away since I stopped Enalopril two days ago, nothing will show on the scan three days from now.” I did the scan for her, which means OPENED MY WALLET, and I literally have zero gall stones. I don’t even have one sitting there in a place that isn’t causing pain.

I also had asked for some tests to make sure my kidneys are doing ok on the new drugs, and to test my cholesterol, and she complied.

I start taking the Losartin (the new BP medicine) and I feel fine. I start the Zetia again. I start having BP spikes again. I increase the Losartin, I’m really not sure it’s working.

Then a few weeks later I do the blood test, first time in my life my kidney function is below normal. I stopped taking the drugs. I call the doctor for a repeat, they have no record of my test results (idiots) I go into the office and finally get an order for a repeat. A few weeks later I do the repeat, still low kidney function, but better than last time, and the doctors office calls me to stop taking my medication (I already did that on my own remember) and repeat the kidney blood tests. A month later my numbers were in the normal range, but very low.

During this time I increased my thyroid meds and my BP came down. It’s a little erratic, but rarely is above 130/80, so I’m not rushing to take BP meds again. I do want to talk to an endocrinologist about playing with my thyroid drugs. My BP is down, but I’m losing a ton of hair from it, and my sleep is a little messed up.

I really need to address the cholesterol thing still.

I’ve always been afraid to take statins, because I already have muscle problems.

By the way some Losartin batches are recalled for having traces of carcinogens that should not be there. Tainted medicine. As far as I know it was not the Losartin I was taking, but I didn’t keep up with the news reports.

Kardamom's avatar

@chyna I am so sorry to hear that you had a heart attack. That is so scary. Besides putting in a stent, what is the doctor recommending, since you have normal weight, and otherwise seemed very healthy? Have they suggested changing your diet in any way? Do they attribute it to family history?

I am so sorry to hear about this, and I hope you take good care of yourself, and that you have others taking good care of you <3

chyna's avatar

I do have a family history of heart attacks. My dad died at 56 and my brother died at 61 of heart attacks. My doctor just told me to keep taking my statins and gave me pravix and said to never miss a dose. He knows I exercise and eat fairly well. I do like pizza though.

JLeslie's avatar

@chyna Did your doctor consider putting you on Zetia instead of the statin?

Also, did you have symptoms for days or weeks leading up to your heart attack? Short of breath that sort of thing?

After hearing your story it makes me wonder if it’s wise for people with our family history and cholesterol to get screening tests to evaluate our artieries rather than just guessing. If you had, you likely would have had the stent put in before the heart attack. My dad was “lucky” and had his bypass surgery before he had a heart attack. His heart muscle is perfect. Better than mine actually.

My cholesterol has been between 240 and 330 during 2018. Bad genes, I should be vegan really to protect myself better.

I don’t want to take the thread way off track, but it goes to the medicine question also. Many people stop taking medicine, because of side effects.

yesitszen's avatar

I’ve decided to go off my “meds” which are the poison called statins.

Dutchess_III's avatar

Well, no. I just hate it when my BP goes 200+ / 140+ and stuff.

snowberry's avatar

@yesitszen Good for you for thinking for yourself instead of paying somebody else to do it for you!

I was told to start taking Staten drugs about a year and a half ago, so as per usual I studied up about it all I could. This book (see below) is one of my main sources of information, and anybody who is on a Staten drug would be well served to read it. It’s well researched the rightful to read and it just might save your life. I changed my diet, lost some weight and I’m doing quite well without the drugs!

snowberry's avatar

Oops, typo there. I meant it’s delightful to read.

chyna's avatar

@Jleslie Yes I tried Zetia with no results at all.

Caravanfan's avatar

Generally I recommend people following their doctor’s advice instead of the advice of a random youtube video. But that’s just me.

JLeslie's avatar

@chyna Thanks.

@yesitszen There are studies showing statins do reduce risk of heart attack. I’m not pushing, remember I’m afraid to take statins for a very specific reason, although I continue to consider possibly trying them. I’m betting they have extended my father’s life. We are all shocked he has lived as long as he has.

However, there are some side effects for some people. I personally don’t like the current recommendation to start at a very high dose.

Pinguidchance's avatar

Doctors often prescribe statins for people with high cholesterol to lower their total cholesterol and reduce their risk of a heart attack or stroke. While statins are highly effective, they have been linked to muscle pain, digestive problems and mental fuzziness in some people and may rarely cause liver damage.

Statins include atorvastatin (Lipitor), fluvastatin (Lescol), lovastatin (Altoprev), pitavastatin (Livalo), pravastatin (Pravachol), rosuvastatin (Crestor) and simvastatin (Zocor).

Having too much cholesterol in your blood increases your risk of heart attacks and strokes. Statins block a substance your liver needs to make cholesterol. This causes your liver to remove cholesterol from your blood.

If you think you’re experiencing side effects from statins, don’t just stop taking the pills. Talk to your doctor to see if a change of dosage or even a different type of medication might be helpful.

To hear that some people on fluther are off their meds would come as a quite the surprise to a consultant physician.

JLeslie's avatar

^^I don’t think doctors are surprised at all. They know some patients are noncompliant with medication. I don’t regret going off the blood pressure drugs for one second. The doctors were not taking my reaction seriously enough. This has happened before in my life. One time it was an antibiotic and another time it was Synthroid of all things. They can switch me to many other drugs but wouldn’t. I wound up in the ER and a massive dose of IV steroids, because of the antibiotic. The other I had to beg to try another thyroid medication after months on Synthroid, and within 72 hours of the new med I was completely better from the side effects I was having.

I just thought of two more that I won’t bother to write out. One my own, and another a friend’s experience.

So, these type of experiences make some of us take care of ourselves, sometimes to our own detriment. I always say one day I will avoid going to see a doctor, or not do a recommended procedure, and it will kill me.

Dutchess_III's avatar

All drugs have side effects. What is so special about statins?

JLeslie's avatar

@Dutchess_III Doctors give them out like candy, and the patient is rarely warned by the doctor to watch for certain side effects. I have no idea if doctors are routinely doing blood tests within a few weeks of starting the drug to see if everything looks ok. Now, they are often prescribed initially at higher doses than previously. They are thought to raise blood sugar levels in some people. A percentage of people get muscle and kidney damage. If the sugar levels get high, some doctors will prescribe sugar lowering drugs rather than stopping the statin to see if that is the underlying cause. Now, you are on another drug.

I know one person who was fairly crippled by them, and another who died. This was back when statins were fairly new. Now, doctors take the muscle pain more seriously, although most doctors will try hard to keep their patients on the statin in my experience. reducing the dose, or reducing to taking it every other day. I personally question this practice, because it might still be doing harm, I don’t know if they have done studies to follow people who have this side effect, lower the dose, and whether over time they are much more likely to develop kidney damage.

The kidney problem and muscle pain is underreported. People go off the drug themselves, and the prescribing doctor might never know about the side effect. Even if the doctor is told, the doctor might do nothing to report it.

Dutchess_III's avatar

Well, if your doctor think you are at a high risk for heart attack and stroke because of your cholesterol level, I guess you better listen to them.
My cholesterol levels are really, really good. My doc said he’s never seen anything like it in 30 years of practice. I’m lucky.

JLeslie's avatar

@Dutchess_III I don’t need a doctor to know I am at high risk.

Dutchess_III's avatar

Actually, I was talking to everyone in general, but I can see why you thought I was talking to you @JLeslie. But how do you know you’re at high risk if a doctor hasn’t told you?

JLeslie's avatar

@Dutchess_III Oh, plenty of doctors tell me. Almost every doctor I know tells me to take some sort of cholesterol lowering drug. Most also want to put me on BP drugs when my BP is high. The doctors who are the least aggressive, funny enough are the cardiologists. The GP’s, internal medicine, and random others are the heaviest handed with the prescription pad regarding my risks.

I did need a doctor to find out my cholesterol is high, although now I think you can do at home cholesterol tests, but even without that I don’t need a doctor because people die young on both sides of my family from heart disease. Just like women who have women throughout their families who have breast cancer, you don’t need a test, your chance is really very high you will get it. Even if you are negative on the BRCA gene your chance is very high.

I do have very high cholesterol since the first time ever tested when I was in my teens. Now, my blood pressure is creeping up, and I have gone through times of high blood pressure consistently for months, because of my thyroid and doctors being slow to give me test results. Now, I can get my own results, I usually have a little extra medication, so I can adjust on my own. It actually was a doctor who helped me have extra scripts to get my blood checked, and helped me be able to have extra medicine for flexibility. Right now, I have doctor who won’t do it, so I slowly am running out of my cushion. The BP is creeping up though even when I regulate my thyroid now though, things have changed a little.

I have a chronic condition that causes inflammation in a specific part of my body, so I wonder if that increases my chances also.

I was extremely deficient in vitamin D (probably for years) so I assume that might have cause calcium to lay around in my arteries, but I have not had that tested, my mom is full of calcium.

I have a low heart rate, and arrhythmia, and two leaky valves. Eventually, one or more of those things will probably need to be addressed.

I recently have felt at times that my heart has a flutter or quiver. Maybe I will address that soon if it doesn’t stop happening.

Dutchess_III's avatar

OK, so you DO need a doctor to tell you you are at high risk, and you should do what the doctor tells you to do to minimize the dangers of it.

JLeslie's avatar

@Dutchess_III I don’t need a doctor to see my relatives died from heart disease. I don’t need a doctor to know that eating better will improve my chances of not having a heart attack.

I also don’t need a doctor if he is not going to listen to problems I have taking a drug, and he won’t switch me to another drug, or won’t prescribe one I am not afraid to take. They may think my muscle pain and problems are just normal aging for women, but they are not. The stress dealing with the doctors is another factor for heart attacks. Going from doctor to doctor, and spending tons of money is not going to help my stress level. If I get lucky and get a great doctor, that’s great, but I often don’t and I move a lot, which means I start from scratch a lot.

Recently, when I tried new drugs I ASKED for blood tests, and it was because I ASKED that I found out my kidney function went down below normal.

It’s very stressful having to doctor oneself. I rather not have to do it. I wish I could trust the doctors more. I have had a couple doctors who believe me, and see that I am not trying to be noncompliant, I am trying to find something that will work for me as an individual within reason. I spent two years struggling with regulating my thyroid, and three doctors trying to lecture me how to take my thyroid drug. Finally, the 4th doctor believed I was very good about taking it, and worked with me to figure out what was going on.

There are people like me with chronic issues that tend to have problems with medications and who have pain and discomfort for various reasons, and we are often dismissed as being hypochondriacs or a pain in the neck. Some doctors see that the reason we reel a little is because our bodies are actually plagued with these things, and we are not crazy, and not trying to be obstinate.

Caravanfan's avatar

@JLeslie “Doctors give them out like candy”

No, they don’t. They follow the AHA/ACA guidlenes on cholesterol management

JLeslie's avatar

@Caravanfan I have no problem agreeing with that. They follow the guidelines.

JLeslie's avatar

Sorry for another post, but I want to clarify I think I should be on cholesterol lowering drugs at this point.

Dutchess_III's avatar

Well, are you?

JLeslie's avatar

No, not right now. I started Zetia. Then I had the whole thing with the low kidney function and stopped the Zetia and the BP drugs. I’m going to the endocrinologist Wednesday, a new one. I’ll discuss it all with him/her. What I want is to be given three blood test orders. I want repeat kidney function and do thyroid testing to make sure kidney continues to stay in normal range. Then I want to start the Zetia, then get blood tests for kidney and cholesterol for a month after start. Then assuming it’s all normal repeat again 6–8 weeks later D, B12, kidney, cholesterol, thyroid. All this time continuing to monitor my BP.

I don’t want to have to pay for three doctors appointments and travel over an hour one way for an appt just to get an order for a blood test, it isn’t right. That’s the trick here, they are disgusting with come back every 2 months. I do intend to go back to the endocrinologist to discuss things though. I feel pretty sure I will need to tweak things anyway. I just want the data before going, and she should also. In TN I would have no problem with this scenario, I wouldn’t have to request it, the doctor would just write it that way. If anything was really off I would of course come in for an appointment sooner than planned.

Fixing my cholesterol and BP to prevent a heart attack or stroke that might happen in the future has to be weighed against killing my kidneys fast obviously. I’m inclined to think it was not the Zetia that caused the Kidney problem.

One cardiologist put me on Zetia and said it was her first choice for me anyway. Another cardiologist said it doesn’t have any proof it reduces cardiac events and I should be on a statin period.

And so it goes…

yesitszen's avatar

It would be nice if someone were to watch this, or other videos like it and then discuss.

LuckyGuy's avatar

That is an enlightening presentation. (I will admit to speeding it up and hopping.)

He shows how drug companies can manipulate data to give the appearance of a significant change when in fact the improvement is insignificant.
Look at ~44:30 The increased risk of diabetes is many times greater than the reduction in cardiac events.

For that vast majority of the population we know what works: keep your weight under control, exercise, and don’t smoke! But people want a magic bullet.

yesitszen's avatar

@LuckyGuy exactly.

There is nothing good in a statin. It is poison. It does the opposite of help and puts us at risk of other horrible diseases, while hurting us, muscle aches, liver, eyesight. What a scam. The irony is we’re calling it medecine. You are sick, you take a pill, you get better. This is crack you will take for the rest of your life, which it will make painful and shorten for you.

The second most prescribed drug, and I use that word… well… correctly, is viagra. So when you develop impotency from the statin, they’ll be happy to supply you with something for that. We are sheeple.

Caravanfan's avatar

@yesitszen That is all incorrect information. Every single word.

yesitszen's avatar

@caravan time for you to learn about the subject. I have.

Show me something to back up the safe and effective use of statins. And their benefits. Stats.

JLeslie's avatar

Here is a study:

Here is what the UK says:

@yesitszen I watched some of the video you linked. One thing I encourage you to do if you do a high protein (with meat) and low carb diet is get your cholesterol checked within a month of doing the diet. My friends who have a history of high cholesterol who have done it, lost weight and their cholesterol numbers were terrible on the diet. Really bad.

Most scientific studies I have read that lower cholesterol and prevent heart disease are mostly veggies, some fruit, very little meat. Mediterranean diet, Ornish, and even an Asian diet.

I think there is a huge difference physiologically between the average person who is fat and has high cholesterol and the person who is thin or average weight and has always had high cholesterol. The genetics really matter I think, and it’s nit clear to me if any study looks only at people like me who have been very high cholesterol since childhood, even when I was skinny and very active. When people talk about diet and their own cholesterol numbers, if they don’t know what their cholesterol was at age 16 (or younger) then I never have confidence their situation is like mine.

Caravanfan's avatar

@yesitszen I’ve already linked to the data. Not going to do it again.

Dutchess_III's avatar

@yesitszen…. you do realize @Caravanfan is a doctor…..

Caravanfan's avatar

@Dutchess_III He doesn’t care.

yesitszen's avatar

So are all the doctors prescribing statins. They are all sheeple and part of the scam.

Do you realize the people who explain the horrors of the poison are scientists and doctors?

Tropical_Willie's avatar

You understand Dr Sam Robbins is selling “snake oil” for lowering cholesterol. ^^^^^

Caravanfan's avatar

Zen has left the building.

snowberry's avatar

My husband is on Staten drugs. They make him feel awful all the time, and they’ve changed his medication over and over and over. I was told to take them too, but I have found other ways to deal with it, and I feel pretty good! In fact I feel better than I have in years.

Here’s my take on it. If I need to take statin drugs and feel awful for the rest of my life, my quality of life is going to go right down the toilet. I don’t think they would actually improve anything. I don’t want to live forever, however I do want to live a quality of life that statin drugs will never allow. The statin drug circus is not for me.

Caravanfan's avatar

@snowberry @yesitszen has left the building.

snowberry's avatar

But I’m still here. :D

Caravanfan's avatar

@snowberry Oh, I know. But we get along better if I don’t engage. :-)

Response moderated (Spam)

Answer this question




to answer.

This question is in the General Section. Responses must be helpful and on-topic.

Your answer will be saved while you login or join.

Have a question? Ask Fluther!

What do you know more about?
Knowledge Networking @ Fluther