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620048 tn?1358018235

I know what it is...statins !

I just realized this morning that I am weak and so fatigied and probably a few other side affects are being caused by the Lipitor they put me on....I told the DR i didnt want to take them but couldnt remember why but I remembered this morming.

I went thru this before and i stopped them,,,,,,i dont know what they can do but this is not good.

hugs, meg
13 Responses
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1045086 tn?1332126422
My apologizes Lulu.  Your post may have set me off a bit but I wasn't upset with you and certainly didn't think you wanted to provoke me.  This is a subject that seems to trigger my sometimes hyper-intense responses.  I probably should have listened to myself before I made the original post and just left it alone completely.

It was clear to me that you are weighing your options.  I know it's hard to find the right balance for our health care when more than one process is wacky.  I'm glad you've had doctors that listen and are here with us to celebrate two years post MI.  Many women have a different experience.

I think part of my anger comes from the fact that I saw a doctor that I loved, respected, and knew was informed about the latest medical information.  We talked openly about my care for almost thirty years.  

Now I find myself with long term and increasing symptoms that he tried to treat individually but never connected.  In addition, they may be related to or worsened by drugs he had me on for years.  I didn't push for anything different myself until recently.  

I don't blame the doc.  It took fresh eyes and new symptoms to put any of it together.  It seems we still don't have a definitive diagnosis.  And I don't have a definitive target for my anger, or sadness, or whatever the emotion of the moment is.  I hate the negative person I'm seeing in myself.  My apologies.

Sorry to hijack your page Meg.  I'm with you that statins weren't meant for this girl and I won't be trying them again.  Hopefully this rant will get buried in the topic scroll very soon.

Mary

Helpful - 0
620048 tn?1358018235
Yes, i told my husband about the grape juice, does it have to be red..I love white grape juice..lol

I don't drink alcohol so i will pass on the wine....

hugs, meg
Helpful - 0
572651 tn?1530999357
Good for you Meg - exercise and diet can go a long way to lowering those numbers.  I'm waiting and if those aches hit me, I will once again stop the lipitor.  

I have to wonder how it works so fast - my total cholesterol dropped from 236 (or something like that)  to 158 in just five weeks on lipitor.  

Be sure to add that wine or grape juice to your shopping list.

my best,
Lu
Helpful - 0
620048 tn?1358018235
I have been off the lipitor for like 4 days now and I am returning to a normal MS person.  I see my Dr soon and I will not take that med again.  He  will just have to come up with something else !

I am going to try to do it with diet, so I am taking notes and making a list....I so love StickyNotes, you can use then for notes on here and i dont have to have paper to lose or pens to find..

I am never offended on here, a lot of you know more than I do but I am finally learning. Plus none of us know everything, well, maybe Quix..LOL  
Helpful - 0
572651 tn?1530999357
Hi Mary,

I doubt anyone here is offended, and I hope that you didn't think I was trying to provoke you into being angry.   Please go back and read my reply and you will see I am on the fence right now about statins but trying to work with my cardiologist and PCP, who both wanted me back on Lipitor.  

I believe you would find a lot of agreement with everything you have written among many here AND on the heart boards.  I am not disagreeing either.

There is a reason our bodies produce cholesterol, and taking that ability to produce it away might well be detrimental.  Like you, I think there's still a lot we don't know.  

My two year anniversary of my MI is this week - for the first 6 weeks post-MI I tried it the cardio's way with lipitor.  Then the next 21+ months I did it my way, with my cardio's blessing.

Now I am back to trying it the cardio's way again.  The big difference this time might be the change to my level of exercise that was virtually non-existant two years ago to my regular routine now.  Or maybe all the other drugs in my system are drowning out the sounds of the lipitor creating problems.  

I do wish that everyone could have a partnership with their doctors that lets them work with their doctor instead of being wary.  Too many of you feel betrayed and abandoned by the medical system instead of helped.

as always,
Lulu




Helpful - 0
1045086 tn?1332126422
Yes, Rice Yeast Rice is nothing but a statin without a big sales rep.  Therefore, yes it will decrease Co-Q-10.  Every statin drug does.  Funny a doctor never told me that in all the years I took Lipitor or Zocor and felt like crap.  Did get the OK to supplement when I found out about it myself.

I agree also, the studies can't decide if statins will help or hurt MS patients.  We all just have to listen to our own bodies and intuition.  Medical research is famous - or is that infamous - for changing recommendations after years of swearing by their previous one.  I might think that's evidence of progress if they didn't do it so regularly and then also revert back to old recommendations from time to time.

One of my problems with statins is that they lower the cholesterol my own liver makes.  I'm less worried about self manufactured cholesterol than about what I take in from other sources.  (I had a friend with total cholesterol over 900.  She died of non-cardiovascular cause well into her 80's.  I don't need too live forever.)

If there were no side effects I wouldn't be so concerned.  The drug companies want to tell us only the rare person will have problems (rhabdomyolysis) and otherwise just minor side effects hardly worth mentioning.  So why do so many people I know have multiple problems while on statins?

Doctors may agree with Pharma on the benign benefits of statin drugs.  I don't trust the cardiologists on this any more than most here seem willing to trust their neurologists.  I'm NOT suggesting that ANYONE (especially with established history of heart disease!) follow my lead.  I doubt that I need to worry about much agreement anyway.

For me, after just six days of statin use I am again feeling an increase in fatigue, sleep problems, and palpitations that cause a general feeling of uneasiness.  Cardiac testing with these symptoms has been repeatedly negative over the years.

My cholesterol had dropped from 270 to 230 without drugs.  Other indicators in the lipid panel were equally improved.  I think I'll return to my old plan that was working (slowly) without adding noticeable symptoms to my already too long repertoire.  It's just right for me.  I'll live happier, whatever the outcome.

FYI:  If I sound angry, it's because I am.  Can't aplologize for that at this point.  It's just where the medical community has dropped me off.  I am sorry if anyone is offended.  I think I'll go do something positive and try and regain some balance.

Mary

Helpful - 0
572651 tn?1530999357
And yes, niacin and grape juice do look very promising.  That's why daily glasses of red wine are recommended for heart health.   :-)
Helpful - 0
572651 tn?1530999357
Hi Meg and everyone else,

There is a review of statins and their use by MS patients studies on this UK website  that offers an easily understood explanation.  The verdict is still out whether statins work for MS patients or if they hurt us- the evidence keeps swinging one way and then the other, depending on the study.

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1319

I was on lipitor for a short while (about 6 weeks)  after my heart attack, but went off it because I was miserable.  I was not yet dx'd with MS, so who knows if the aches and twitches were from the Lipitor or the MS.  I felt like I was coming down with the flu.  The problems did stop pretty quick after I stopped the lipitor.

Stopping these drugs does not require a taper, from everything I know.  My cardio knew I was stopping the Lipitor and did not advise the taper either.

From all I know, lipitor and other statins do not cause bruising either.  I'll have to look into that further but the way statins work doesn't thin the veins, capillaries and arteries like blood thinners (coumidin, plavix, and those drugs).

As for the reports that statins cause ALS, it appears that those studies don't hold up .  These is strong evidence, though, that people who already have ALS may have their deterioration hastened by using statins.   Google "link between statins and als" and you will find numerous articles on this topic.

There are all sorts of ways to work on your cholesterol levels - just be sure whatever you are doing is medically sound.  Exercise and diet are key to being successful and unfortunately many MS patients (and ALS) are not able to perform enough exercise to be beneficial in lowering the bad cholesterol.

Red yeast rice has gotten a more serious look recently too.  There are all sorts of things that it was indicated would help,, including sarcodoisis.  None of the research studies have proven it to be effective. To the contrary, it looks like it may reduce your levels of Co-Q-10, which would not be a good thing.


Just recently my cardio put me back on lipitor -  my cholesterol was creeping back up and my LDL (L=lousy!) was out of line.  I was on lipitor for one month and had just new blood tests and liver panels done - liver is fine and the lipitor once again knocked my cholesterol by almost half.  

I saw the cardio this week and for now he wants me to remain on the lipitor - and I will, or at least I will until I have unexplained side effects.  

It is a controversial topic on many heart boards - I hope you do some more research on the topic and discuss this with your doctor as well.

my best,
Lulu
Helpful - 0
867582 tn?1311627397
Re controlling lipids/cholesterol, I forgot to mention niacin and possibly grape juice.

Can't find the doctor's website - the one with all the Lipitor/ALS cases.  The medicos/big pharma must have eliminated him somehow.  If I do later find him I'll post him here.

Weakandfalling
Helpful - 0
867582 tn?1311627397
Hey,

Statins have been linked to ALS - especially Lipitor.  But, of course, they don't let that info out because Lipitor is one of big Pharma's best cash cows.  I was on Lipitor and had a reaction to it.  Now I have ALS/MS symptoms (undiagnosed).  Red yeast rice is no better for lipid control since it too is a statin -  a natural one.

Since going off statins I have learned a better way to help control fats by increased exercise (can't do that too much now) and eating lipid-enhancing things such as oatmeal, apples, avocados, cinnamon, nuts, high fiber etc. that either lower overall cholesterol or raise the good cholesterol (HDL) for a better cholesterol ratio of good to bad.

There is a retired doctor posting on the Internet who has thousands of cases of ALS on file that were linked to Lipitor use.  I will see if I can find his website.  If I find it, I'll post the link here.

Weakandfalling
Helpful - 0
620048 tn?1358018235
I have done this once before but It was another Dr so my new Dr didnt have that information and, of course, I couldn't remember why I couldn't take them so I agreed to try again...not too long after that I started having the same reactions as before, but at this time I didnt remember it was the same as before and because my cardio also found the vitral valve stenosis about the same period of time.....I was focused on the valve problem as the source of my symptoms...however, as it turned out the mitral valve was not bad enough to be causing these symptoms.  It must have joggled my memory and I remembered why i had quit the statins the time before...the fatigue, dizziness, the shortness of breath and some other smaller symptoms, which totally knock me out because I have the same symptoms anyway...

okay, the last time I didnt taper and I have not this time and neither of my Drs have told me otherwise..and I trust both of them.

Would like to hear more input on this, please, just so we know.

thanks, meg

Helpful - 0
1045086 tn?1332126422
I've tried to keep my non-traditional view of statin drugs to myself but it's hard when I hear so many people having trouble with them.

In November of 2008 I was having a lot of pain and decided to see if stopping the statin I had been on for years could help.  It didn't lessen the pain but I did find out that I was MUCH more alert after I stopped taking it.  I stopped bruising so easily and the heart palpitations I had on a regular basis also stopped completely.  The doc had always said they were from the blood pressure pill I take.  Guess not.  I did also start taking Co-Q-10 sometime soon after I stopped the statin.

Believing that it is more important to decrease inflammation (so my body doesn't think it has to repair vessels by laying down plaque) I started taking B6, B12, folic acid, and Omega-3 supplements.  I'd rather go this route and be awake to know if I'm having a heart attack.

Recent blood work has the doc requesting I restart statins.  Since the CRP was also on the high side of normal, I've decided to add one capsule of Red Yeast Rice daily.  It is a natural statin (I hate what the drug companies are doing to push their products).  In low doses, the statins have an anti-inflammatory effect that I'll take advantage of as long as I don't end up fogged again.  I believe it is this anti-inflammatory aspect that is more beneficial in preventing heart attacks than the drastic lowering of cholesterol.

I'm not convinced that statins are a wonder drug that we all need to take.  I have a lot of concern about rapidly and drastically lowering my cholesterol.  Here's why.  It's my understanding that MYELIN is made from cholesterol.  When my immune system could be busy destroying myelin in my brain and spinal cord, why would I want to limit my ability to rebuild it by eliminating base product?

Is it a coincidence that side effects of statin use include muscle pain, memory problems, fatigue, and increased incidence of MS and other neurological disease?  I'm afraid the pharmaceutical companies may have our docs brain washed about these drugs.  They have been a HUGE money maker.  If we are told often enough and loudly enough that something is true, it is often difficult to ever challenge it. (Like your mother telling you that walking to school without a hat on is sure to make you sick.)

I certainly wouldn't suggest anyone challenge their doctor's orders based on my opinion.  Do some research of your own.  Try to find sources that have nothing to gain by putting their finding out to the public.  I learned so much more than I've limited myself to here.

One caution.  IF YOU DECIDE TO STOP TAKING STATINS, THE DOSE NEEDS TO BE TAPERED before they are discontinued.  Talk to your doctor.  There is some evidence of an increased risk of heart attack two weeks after stopping statins abruptly.  (Perhaps that bruising I had was from the statin somehow thinning my blood?)

Just some more  S T U F F  to think about..........

2-cent Mary
Helpful - 0
648910 tn?1290663083
Hi meg, I too take statins.  I have been having serious muscle pain in both legs but the left more so than the right.  I quit my crestor appx  one week ago.  I haven't noticed any differences yet but I am hoping that is all it was.  

However the side effects can be pretty severe.  I will wait maybe two more weeks and if there isn't any difference i will start them again.  I also have a GP appt in two weeks.  I will discuss this with him.

Let me know if you have a difference.

terry
Helpful - 0
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