Neuropathy Continues after Discontinue of Statin

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

Postby mgguy » Sat Apr 07, 2007 1:24 am

Has anyone noticed that their peripheral neuropathy symptoms have worsened after quitting statins? I was told this could happen but don't really understand how. I have burning/stinging in both feet and occasional shooting (but mild) pains in my hands that seem to be getting a little worse since getting off lovastatin 12 weeks ago. The UC San Diego Statin Study program director said that it can take several months to begin to notice improvement (unlike other statin-related problems which usually begin to go away much faster), and that it is even possible the first several weeks to get even worse before getting better again. This sounds counter-intuitive to me; why/how would things get worse when the cause (statin) has been withdrawn? Has anyone else experienced an increase in PN or other statin-induced conditions after stopping the drug? Can anyone offer an explanation how this is possible?
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Postby poohhel » Sun Apr 08, 2007 2:48 am

Yes I too have noticed my PN is getting worse. I have been off of Vytorin since March 26th...and I am in more pain now. Then to top it off, I am starting to have a reaction to the medicines my doctor gave me (gabapention) to help relieve the symptoms a bit. Although I don't know why I am now having a reaction after 14 days on the meds. Additionally, the reaction didn't start until I started the "statin alternative" supplements.

But the pharmacists believes it is the Gabapentin causing the allergic reaction not the supplements; but to be safe, I am off of all of it until the rash and itching clears up.

I don't understand it all either but I see my neurologist on Monday and hopefully he can clear some stuff up. Although my appointment Monday is supposed to be for EMG and NCV test.
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Postby mgguy » Mon Apr 09, 2007 12:31 am

Poohhel, thanks for sharing your experiences. I have heard that PN from nerve damage can take a long time to heal, but am now starting to realize that it can get worse too. I have been off for 12 weeks and am now starting to notice more sort of itching and slight pain in my hands too. I am trying to find out whether this can happen from statins, or does it mean that something else may be causing it. I will see my doctor on Wednesday to get his take on it. He thought 2 months ago that it could be due to statins, but I don't know if he will change his opinion about this now that things have gotten a little worse. I'm going to ask him for a nerve test, and he will undoubtably want to do some additional ones. I will post what I learn as it unfolds...

I hope you start finding relief soon. You haven't been off for very long, and with any luck you will be one of those who get better sooner rather than later. I'm rooting for you.

If anyone else has any experience with worsening symptoms, or knows about this, I would be greatful to hear about it. Thanks.
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Postby catspajamas » Mon Apr 09, 2007 12:48 pm

I have been off of statins since 2002....the neurapathy isn't getting better. I had ex tensive nerve testing at Mayos when I was at my worst in 2002. They also did a spinal test and a new test where they take fat out of your abdomin and test it...The nerve tests just confirmed what it wasn't, not what caused it...I was relieved it wasn't ms or lou gerhigs or some other dreadful nerve disease. They did suspect a drug reaction..I came home after all those painful nerve tests knowing no more than when I went up there. I wish I would of found this site 5 years ago...Since on COQ10 and Metanx I am feeling a little improvement . I can't take the L Carnitine even at small doses...I always had IBS and my colon just don't like it...The painful cramps/diarrhea isnt worth it for me....I have cut sugar out of my diet, no aspartime either...For some reason if I binge on sweet stuff the pain is worse...Anyone else notice that?...
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Postby GWardMD11 » Sun Apr 15, 2007 9:46 pm

I've dealt with this problem for over four years now. I'm almost symptom free now.

I would advise to all of you that you get a book called "Natural Cures". This should be the bible for us to live by (although some of the things the author states are a little impractical, most of his writings are 'spot on'). There also is a follow-on book to this one "Natural Cures Revealed" of which I have not read yet.

Yes, COQ-10 and other vitamin supplements might help some... but what I have found that has really worked is glyconutrients! You can look this up. I use a Mannatech product, but there are others out there available. I've been in direct communication with 'Doc' about what this product has so far done for me, and it does have some remarkable healing properties. He has shared some stories of others with the same results I believe. Contact him directly to get his 'take'.
Anyway, if you go this route... you'll need to double or triple the normal amount. You are welcome to email me directly and I'll let you know what I have taken that has worked for my neuropathy in the past few months. I'm no doctor, but have become VERY educated on these statin drugs and can only share my testimony and that I've heard from others. Anyway if you take these statin drugs for any length of time (normally years), eventually it passes somehow through the blood brain barrier and lowers the cholestrol level in the brain. The mylein sheath is exposed because of this lowering level, and memory functions are also sometimes impaired. Make no mistake that the brain needs cholestrol and it's the vital nutrient of the brain as "Doc" and other MDs will verify. Taking it away is like draining the water out of a bath and then getting in. It's also kindred to a sparkplug in your car misfiring (output results) and the signals sent throughout the body are, well, just plain screwed up.

Most people that I have talked with have the most profound effects in their feet (such as my case), but twitching and other reflexes can also be affected. Additionally, my fingers used to curl up into the palm of my hand (uncommanded) and I had a very hard time walking and every step I took I was in constant pain. Notice this was in the past tense. Most all of my symptoms have subsided (I'm about 90% back to pre-statin levels) and I feel better than I have in years!!
Eating right, vitamin (and more importantly - mineral) supplements, flushing toxins out (explained in the book I mentioned) and recent glyconutrient treatments have done the trick for me!

I still have an ongoing lawsuit with Pfizer for the pain and suffering caused by there brand of statin and the neuropathy it caused for so many years. I'm not talking only the muscle pain (which I also used to have on the top of my forearms of all things...) but pain that is caused by my nervous system being out of wack for all that time and my feet and toes tingling, etc.

The processed foods, drugs (like statins), sodas, and other toxins are literally making us sicker and sicker in this nation. Of course that is good for some industries and doctors I suppose, but definitely not good for us.

Good luck in your quest for health and please call or email me as you wish and I'll share what I know and what I've found to work for myself and heard about others with success stories. Let's all get on the road to healthier bodies. Sorry for all the misspellings.

- Gerry -
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Re: Neuropathy Continues

Postby vipergg22 » Mon Jul 16, 2007 8:09 pm

[quote="Granny102245"]I am so bummed I still have this neuropathy but at the same time it is nice to know there are others who have also had this problem - at least I know I am not imagining this as a side effect. Have you just had the pain/weakness in the feet, or are your other limbs/muscles involved? All my other symptoms have disappeared in the past 19 months EXCEPT the foot pain.[/quote]

Nope you are not imagining it . I took lipitor and zocor back in the 98-2001 timeframe and I developed severe neuropathy in both feet , this started within a month of starting the medicine but of course the dr. said it couldn't be the medicine , now we all know better . Unfortunetly this has not resolved itself 5-6 years later and i still put up with this debilitating disease. I had bad achiness and soreness in my knee joints also though that has gotten somewhat better . Wish i had better news , it may resolve itself over a long period of time or it may never resolve itself like it has not in my case .
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Helping rid of pain...

Postby GWardMD11 » Mon Jul 16, 2007 9:21 pm

I'm currently involved in a sponsored study on glyconutrients and how it may help restore the damage done to the mylen sheath exposed when the chol. level is lowered in the brain. Yes, it takes two-three years for this to occur while on statins, but once you are on that road... the damage is done, sometimes permanently. Anyway, in more research I've come across something else that seems to have beneficial effects. Sea Vegg. Read up on this natural product and also glyconutrients and then try if you can. Please report back your health on using these along with the CQ-10. Hopefully, you'll have the same luck I've had.
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Just an Update on Neuropathy Issues

Postby poohhel » Sat Aug 11, 2007 8:53 pm

Well it has been 4 1/2 months since quitting Vytorin and I still have found no relief for the neuropathy problems in my calves, ankles and feet. The continous cramping, pain, numbness and burning seems to be getting worse especially since starting to take L-carnitine and Co-Q10 ... The neuropathy in my shoulders, arms, and hands is also more predominant these days. .. I am wondering if the supplements are increasing the pain because of a new push to repair the damage?

The only test that has shown anything is my NCV and EMG which showed pinched nerves BUT all other test are within normal ranges and show nothing... My doctors all resort to "nerve damage" and they blame the pinched nerves. Physical therapy has not helped and I have not been able to tolerate any pain meds. I keep having allergic reactions.

Well I am trying to lose some weight by enrolling in Weight Watchers and doing a motionless exercise program (diametric resistance) so we shall see if it helps to get some relief... All my doctors seem to think if I lose some weight I will be all better... I doubt it BUT hopefully they can prove this skeptic wrong!!
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Advice from "just a guy that wants to help you"

Postby GWardMD11 » Sat Aug 11, 2007 9:36 pm

I'm not a doctor but I've done much homework...
The statins cause the problems we're all having, but there are other common ingredents that we ingest or inhale that trigger and continue our path of illness.

If you see Nutrasweet in any form run the other way. ESPECIALLY DO NOT put in hot liquid over 90F. Splenda isn't much better, some even think it's worse. Look for Stevia if you can find it. All natural and better than Sweet 'n Low or the others.

Most processed foods are bad. Avoid like the plague. Look for ingredant labels that are short and sweet. All the things you can't pronounce are mostly bad for you. Eat natural foods. My motto is that if I couldn't find it 100 years ago, I don't eat or drink it--Good motto, try to adopt it.

Anything that 'sprays' (like aerosol cans) do not use or inhale. That includes air freshners. Do not eat at Chinese restaurants or anyplace else that might use MSG. Read up on this product and find out what other foods to avoid.

Diet soda is bad for you. It has an ingrediant that will cause you to crave food and thus you get heavier and drink more diet soda. Smart marketing technique. Americans has the fattest society on the planet. This is a fact. We have been 'duped' by the drug companies, FDA, and food makers. Get smart. Do your own homework and learn what will make you continue to be sick and what other steps you can take to reverse this course. Don't believe what you see on TV or other advertisements as fact. Most aren't.

If you just watch 'what' you eat, not necessarily how much... I think you'll find out you can turn around the neuropathy in time. The body is a marvelous machine and wants to go back to it's natural healthy state, but you must make the right choices for that to happen. Limit your sugar and salt intake (obvious reasons). And again, glyconutrants and supplemental vitamins will help. I'm living proof you can turn this situation around (although I'm still not quite 100%). Good luck on your road to recovery! (sorry about all the misspellings... I'm not a very good writing quickly)
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Postby vipergg22 » Fri Mar 27, 2009 6:45 pm

If anyone has neuropathy and they drink diet soda then you should try stopping the diet soda and equal in your coffee if that is what you use. ?I have found a lot of relief since stopping all aspartame products. Do a search on aspartame side effects , its scary and I believe there is at least some truth to them after seeing the relief I got from stopping aspartame.
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statin drugs

Postby gotts1936 » Sun Aug 16, 2009 12:18 pm

To all and GWardMD11,

I have enjoyed everything that GWardMD11 says is bad for you and survived in great health until I was 70 years old and started using Lovastatin.

If a statin drug has caused your mitochonrial pathway to suddenly create mtDNA mutations, you are never going to reverse that process by stop using all the so-called bad stuff.

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Postby pattyann » Wed Aug 04, 2010 7:34 pm

I have been reading your posts over and over and I am extremely interested in glyconutrients and the myelin sheath...
I am looking at your msg from July 16, 2007 and am wondering if you still feel this way. It is now 3 years later and what do you think now? I have looked glyconutrients up on google and they seem hard to not only find but to buy. I looked at Mannatech and it seems a problem to buy from them and to try find the cost was hard to find out....never did. Is there another company?
I am trying to go on Dr Graveline's 12 supplements. I have been all day in the book Statin Damage Crisis and trying to figure out the dosage and what kind of the supplements is impossible to figure out ... omega 6 and omega 3, lecithin, glyconutrients, ala
He has the indepth knowledge about these supplements that I don't know being a lay person. For example: the kaneke form to CoQ10; the Vitamin E (tocotrienols), etc.
I am trying to figure out the brands and type of the above supplements I have questions about. I don't have a lot of money to spend on the wrong thing and, also, I won't know if they work or not, if I buy the wrong thing.
I hope you can figure out what I am talking about (seems to me the msg is all mixed up).
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Postby catspjs » Sat Jun 25, 2011 11:15 am

[b]Its been awhile since I have been here. 12 years ago my zocor experience began. Its been over 10 years since I quit statins. The muscle weakness is gone basically. But I have the neurapathy pain in both feet which isn't going away or lessoning. Since then, thanks to this site I have learned a lot about statins. I have developed diabetes. I see that may have been statin induced too. I now am on 500 mg of Niaspan with no problems and in fact it is doing a better job of raising my good chol. and lowering the bad than zocor did. I also take fish oil. My total stays around 219 and I am satisfied with that. I show no signs of heart disease and I am 72 yrs old. I do believe some doctors are beginning to realize some people just can't take statins. I am on a low carb diet because of the diabetes and that , probably in a round about way has helped the chol. The doctor I have now said when asked for any allergies I may have I should write down all statins. ( I tried about 4 others). Thank goodness for this site. I have learned a lot about the effects of statins. Sad to say though that the quality of my life is diminished. I can't do what I want to do because of the statin damaged nerves in my feet and the pain I live with in them on a daily basis.Thank you in your continuing education of people damaged by statin use.[/b]
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Ongoing neuropathy

Postby Nancy W » Sat Jun 25, 2011 11:19 pm

Hey catspjs...Appreciated your post. I have ongoing neuropathy in my feet, and a slowly spreading numbness in the ends of my toes. In fact my hot/cold sensation is diminished in a "sock" pattern, though I don't notice it unless I get in something like a hot tub, or very cold water. But with the news about diabetes and statins, I would have to say that I have been wondering if I have diabetes now. I have always had normal blood sugars. I am 62. What a bummer...even if it is just the darn neuropathy from the statins.

The other thing that just happened to me was almost like a failure of the muscles to work when I was quickly climbing about 6 flights of stairs up out of the Boston subway when an escalator was not functioning. I just came to a stop and couldn't go on for a moment...finally forced myself and I got ther rest of the way up. Unsettling.
Nancy W
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Re: Neuropathy Continues after Discontinue of Statin

Postby Nancy W » Sun Oct 25, 2015 7:11 pm

Hi Granny...The form of CoQ10 to take, especially at your age, is Ubiquinol (not Ubiquinone). The Ubiquinol is more readily digested. Jarrow makes a good version, and there are other companies who do this form:

Reference article link from ... Pq9q4q7LfA

In classic neurology, the rate of regrowth in peripheral nerves, if the myelin sheaths (insulation around the axon/actual nerve) remain intact, is about 1 inch per month. So, for instance, I have a 29 inch inseam. Including the length of my foot, that comes out to about 36 inches. It took over three years for the nerves in my legs to heal, however, my toes, especially on the right side (the first to be affected), never healed completely. So now I continue to have altered sensation and pain in my feet, and I have to watch what kind of sox and shoes I wear. Additionally, I lost my ability to feel temperatures (hot and cold) from the knees down, and that never got better. I have realized I also have lost what is called position sense in both legs, and this has resulted in five falls in the last year, since the reflex for catching your balance begins in the ankle joint. I must have lost that reflex, because I go over with no balance response from my body at all.

And now, six years after my most recent statin misadventure began, I am beginning to have progressive weakness and more pain...waiting for diagnosis now, but feel that the symptoms line up with the "ALS-like" syndrome in terms of weakness, muscle twitching and spasms, and pain...

All this to say, I hope you can recover. Make sure you get Ubiquinol CoQ10, and make sure you are getting the building blocks for repair of nervous system tissue, which includes healthy fats, such as fish oil...keep looking through the index of posts and you will see what others have done. Your most powerful ally is information. Learn all you can...
Nancy W
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