Discontinuing Lipitor

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Discontinuing Lipitor

Postby JIMNSC » Thu Oct 20, 2005 1:30 pm

I suppose many of you have gotten off Lipitor or some of the other statin drugs. How'd you go about it? Suddenly, gradually, etc.? I hate to be a new pest but I'd really like to know your experience if you have stopped taking any of them.
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Postby jd0811 » Thu Oct 20, 2005 2:15 pm

I just stopped Lipitor cold turkey with no adverse reaction. The symptoms took about two months to subside although I felt better almost immediately.
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Postby JIMNSC » Thu Oct 20, 2005 2:47 pm

[quote="jd0811"]I just stopped Lipitor cold turkey with no adverse reaction. The symptoms took about two months to subside although I felt better almost immediately.[/quote]

Thank you for your prompt reply, jd. My biggest problem has been fatigue and weak legs. I'm an avid walker and now my walking buddies have to slow down and wait on me - one is 91 - talk about embarrassing. My doc added Zetia to Lipitor which rendered me useless and I stopped that cold turkey on my own. From your experience I will attempt discontinuing Lipitor the same way. Were any of your symptoms what I described?

Thanks again - Jim
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stopping statins

Postby hgreg » Thu Oct 20, 2005 6:32 pm

I stopped taking vytorin 5 months ago "cold turkey" because of adverse side effects (mainly muscle weakness, aches, pains; also severe, overwhelming fatigue and other problems). Prior to that I had been on lipitor, then lipitor plus zetia. I started feeling better within days and, as far as I know, there is no need to taper off the statins. I still have residual effects of my muscles tiring easily and susceptibility to muscle strains, sprains, and pulls. However, I am much better than I was 5 months ago.
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Stopping Statins

Postby JIMNSC » Fri Oct 21, 2005 3:17 am

I appreciate the replies, folks. I did receive an e-mail from the "doc" after I made this original post and he advised me to taper off for three weeks prior to stopping all together. Last night - I split my pills for the coming week - 40mg down to 20mg.

I'm real glad you all had no trouble quitting cold turkey and that you feel better now. I'm looking forward to the same feelings and renewed performance in my walking. I just hope that after 5 years+ on Lipitor, no permanent damage has been done to my muscles.

He also called my attention to his web page and the FAQ section which has some very good instruction after eliminating Lipitor. If you haven't checked that out it makes for some interesting reading.

Thanks again for your prompt responses. I'm so glad I found this forum and have been able to see I'm not the only one in this fix!

Jim
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Discontinuing Lipitor

Postby Granny102245 » Fri Oct 21, 2005 2:06 pm

JIMNSC,
I DISCONTINUED LIPITOR "COLD TURKEY" 19 MONTHS AGO AFTER BEING ON IT FOR 5 YEARS AT 10 MG/DAY. I DID NOT HAVE ANY PROBLEMS DOING THAT AND FELT MUCH, MUCH BETTER WITHIN 2 WEEKS. UNFORTUNATELY THE SEVERE PN IN MY FEET HAS NOT ENDED AND I CONTINUE TO REMAIN HOPEFUL THAT IT WILL NOT BE PERMANENT.
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Thanks

Postby JIMNSC » Fri Oct 21, 2005 2:42 pm

Thanks for the info, Granny, and I hope the pain in your feet is short lived!!

Jim
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I also quit cold turkey

Postby daisie26 » Sun Oct 23, 2005 3:22 pm

I am contacted regularly by nurses under my company's outside health plans. Care Patterns nurses and Guardian Health Care nurses for diabetes, cholesterol and blood pressure. The care patterns nurse kept at me asking if I had any problems on Lipitor. I asked her what kind.
I was holding onto something steady each time I got up from sitting. My knees felt like they'd give way under me. She had heard that so many times; she said call your doctor and stop the lipitor. She never said taper off. It took me about a month to get over that sensation.
After a new blood test, the doctor's nurse called me to say okay restart it. Oh Really!!! Not Me. Go scratch. We had a health fair at work and my readings are back up there but Mom and DAd had readings like mine and they were never on anything. Now I go back 10/25 and I will see what he says. He also has me on Niaspan and boy, do I have things to give him on that too. 500mg. Niacin is not as safe as people thought.
And it doesn't help either. Niaspan also raises Sugar levels.

Pravachol and Lopid never bothered me at all. I was on both of them for years but they didn't cut my readings at all either.
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discontinuing lipitor

Postby dave12 » Sun Jan 08, 2006 7:46 pm

Hello all,

I was put on 40mgs. of lipitor after a minor heart attack and 3 stents in 2001. Then in 2005 early spring i had another stent put in the back side of my heart and the lipitor was increased to 80mg. I was doing pretty well walking twice a day and lost some 16lbs. and then it happened. Headaches, muscle aches, movements, burning pain, stiff neck and etc.. Doctor had no idea what my problem was. I started researching and found the side effects of lipitor and tricor that i was taking. I stopped cold turkey 3 wks. ago both lipitor and tricor. I'm still fighting the muscle movements, pain, flu symptons, weakness, but hope it will get better. I guess i should have gradually stopped the lipitor after reading some of the posts here. Do you think i need to take a smaller dose now for a few weeks or just continue on cold turkey? I've been taking 50mg. of co q10 a day, 500mg. vit c, and a mulit vitamin since stopping the lipitor and tricor. Anyone have any idea how long it takes to get the statins out of your system or is it too late for me after taking those for 4 yrs.? Thanks-Oh i forgot, i'm 56 yoa w/m 5'11 and 186lbs right at the moment. Still need to lose another 15lbs. probably, but haven't been able to do much walking with all this pain.
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Re: discontinuing lipitor

Postby JIMNSC » Sun Jan 08, 2006 9:07 pm

Hello dave12 ~ I stopped taking 40mg Lipitor and 10 mg Zetia but did so over a three week period. This was at the recommendation of a doctor (not mine). I just wanted to share that with you since a doctor advised weaning off Lipitor. I recently read where the first 10mg of Lipitor gets the "majority" of the improvement so I don't understand why I was put on 80mg then dropped to 40mg when my diet and exercise started assisting with the lipids.

The Zetia I was prescribed was to assist the Lipitor as it works differently from statins. In lay terms it eliminates some chlesterol in the bowel. I also just read where Zetia could be prescribed with statins or alone for cholesterol so I may just start back on it by itself since I get my lipids checked in two more weeks - takes about that long to kick in. Also, if it bothers me as Lipitor did I'll be able to tell the doctor (internist). I'm going to own up to stopping the Lipitor on my own.

It also upset me when I think no mention was made of the need for COQ10 while using statins!! I now take 100mg daily. Let me hush. I didn't mean to go into all this.

Jim
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Postby prof » Sun Jan 08, 2006 9:42 pm

Hi Jim--I stopped Lipitor after only 17 days, about half of those on split pill (5 mg.) My symptoms included leg weakness. BTW, I was on 120 mg. CoQ10 (QSorb) the entire time I was on it, so that clearly did not protect me from the side effects, confirmed by a neurologist and physiatrist.

Now, one month later, I am better but not entirely--perhaps 50%.

prof

p.s. I am also an avid walker--a sometime competitive race walker. I am almost back to what I was doing, but I have much more fatigue, soreness, joint pain, etc. the next day. Up until the day I first took Lipitor, I never had any of that.
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Postby Tulip » Tue Jan 10, 2006 3:09 am

Prof and others,

There will come a time (maybe sooner than we think) that statins will be a kind of rare 'last effort' medicine, used only in peculiar situations (like when the immune system has to be temporarily knocked out) and under strict supervision. One of the most well informed researchers in the field is collecting evidence that a subgroup of the population has 'subclinical mitochondrial dysfunction', a genetical predisposition that normally doesn't lead to mitochondrial disease under a life time. Often in these people cholesterol is somewhat elevated, because of the higher needs of their slightly compromized mitochondria. Give these people a statin and... well you beat the life out of them.

The researcher sent a mail regarding a Dutch patient that might be of interest to all of you. I post it below my own text.

Like Dr Graveline points out, Co Q10 is only part of the 'solution' in recovery. Statins are messing around on a very basic fysiological level and no one knows exactely what's going on.

Prof, there is a small Swiss study that shows that about 90 percent of serious exercisers are absolutely 'statin intolerant'.

Best,

Tulip.
+++++++++++++

Statins can themselves produce a mitochondrial myopathy. If she has an
existing predisposition -- say subclinical mitochondrial dysfunction, which
may not ever have led to clinical problems -- then adding statin induced
mitochondrial dysfunction may induce a clinically significant condition.

Then the question is, will it reverse when she goes off. The answer is,
statins can cause several processes, some of which reverse fully, some
partially, and some not; and it is an empirical issue in an individual what
amounts of each are present. Thus, the degree of recovery with statin
discontinuation is empirical in an individual.

Obviously I can't serve as her doctor by second hand email, and would not
regard the following as recommendations but information that she can use,
in concert with discussions with her doctor. Coenzyme Q10 may help, and
there is an argument for starting it before the statins are discontinued. I
like the PharmaNord brand (PharmaNord.com), which has good quality control
- -essential. The dose required also varies, and mitochondrial patients can
require doses as high as 3grams/day for benefit (which is quite expensive).
A diet rich in other nutrients is also essential, and supplementation with
a good brand of cod liver oil (to provide vitamin D and A -- I like
Carlson's Norwegian cod liver oil) and wheat germ oil (to provide food
based sources of vitamin E and another mitochondrial supportive nutrient)
may be prudent; refrigerate both. Also, some selenium may help -- I
personally like water based versions that don't include binders and fillers.

Chest pain, muscle aches, etc are all compatible of course with the
mitochondrial dysfunction.

In terms of going off the statin, it might be a good idea to find out if
the familial hyperlipidemia is associated with shortened lifespan from
cardiac events in her family. Statins have not actually ever been shown to
extend life in any group of women -- even high risk secondary prevention
(4S trial: 12% increase in death in statin group; LIPID trial: neutral
mortality). This hasn't been separately studied in familial hyperlipidemia,
and the answer in this group is not obvious -- statins may be beneficial,
harmful, or the two effects may balance out. This is because some people
may have high lipids as an evolutionary adaptation, because they require,
in increased amounts, the functions that lipids serve (including transport
of fat soluble antioxidants -- perhaps a reason that her mitochondrial
dysfunction, if present, was subclinical prior to statin use.)

I hope this was helpful in some way...

All the best,
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Postby prof » Wed Jan 11, 2006 9:58 pm

Jim wrote:

He also called my attention to his web page and the FAQ section which has some very good instruction after eliminating Lipitor. If you haven't checked that out it makes for some interesting reading.

Jim or anyone--I haven't been able to find this. Can someone direct me. Thanks!!!

prof
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Postby JIMNSC » Thu Jan 12, 2006 10:22 am

Gladly, Prof -

Click on the underlined "Spacedoc.net" link in the top left hand corner of this page. It's just above his picture.

Jim
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Postby prof » Sun Jan 15, 2006 10:08 am

Thanks, Jim--Maybe this Lipitor has made me "thicker" than I think! But the FAQ that I find on the doc's site is specifically about using the site.

Is there a specific heading about withdrawing from Lip? That's what I haven't been able to find. Thanks!!!

prof
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Postby JIMNSC » Sun Jan 15, 2006 2:25 pm

Not that I am aware of, Prof.
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Postby spaceadmin » Sun Jan 15, 2006 4:59 pm

The next newsletter due out at the end of this week will have a link to a new page called Stopping Statins.
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Thank You Dr Graveline

Postby sos_group_owner » Sun Jan 15, 2006 7:10 pm

Re: The next newsletter due out at the end of this week will have a link to a new page called Stopping Statins.

Thank You Dr Graveline. I am asked this question frequently and welcome specific advice about stopping statins.

Fran
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Postby prof » Tue Jan 17, 2006 11:34 pm

Great, thanks!!!!
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