Neuropathy Continues after Discontinue of Statin

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

Neuropathy Continues after Discontinue of Statin

Postby Granny102245 » Fri Oct 14, 2005 9:40 am

I am a 59 year old female who had been on Lipitor for 5 years (10 mg/day), and thought I had no side effects because they came on so slowly and I assumed it was due to aging. I am now post statin for 18 months and even though other muscle problems have ended, the severe neuropathy in both feet remains. I have tried several options including COQ10 and various vitamins without sucess and/or were not tolerated by my stomach and intestinal tract. I would be interested if anyone has found that time alone will continue to heal the nerves. Personally I will NEVER take another statin regardless of what my doctor recommends.
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Re: Neuropathy Continues after Discontinue of Statin

Postby sos_group_owner » Fri Oct 14, 2005 10:56 pm

[quote:1f7461d253="Granny102245"]I have tried several options including COQ10 and various vitamins without success and/or were not tolerated by my stomach and intestinal tract. [/quote:1f7461d253]
Hi Granny,

What dose of CoQ10 did have you tried? My husband took 400mg (split dose) daily for several months after stopping five years of Lipitor. He now takes 200mg maintenance dose daily. The preferred type of CoQ10 should be in gel form with some vitamin E to be absorbed.

Unfortunely for some neuropathy persists even long after statins are stopped.

Fran
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Postby flacorps » Tue Oct 18, 2005 11:10 am

I had a frequent urgency to urinate even when my bladder hardly had anything in it. From what I understand, this is a form of neuropathy. It persisted even after I quit Lescol; however it began to clear up when I later went on testosterone therapy. I believe that prior to that it waxed and waned ... Vitamin C seemed to aggravate it. It may also have been aggravated by furanocoumarins or flavonoids in Lemon and Lime LaCroix sparkling waters, which I have also stopped drinking.
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Postby Dee » Fri Oct 21, 2005 1:36 pm

Hi Granny,
I have nerve damage after taking Pravachol. I was on it for 2yrs. 8mos. and been off for 1 1/2 years and have had no improvement in that area, although some things have improved, nerve damage has not. I had a biopsy a year ago that showed moderate nerve damage with no regeneration. I must use a cane and wheelchair because of weakness. The biopsy also showed lipid deposits in the muscle cells, which I understand can be caused by statins.

When my muscles went to pot (2 months after starting Pravachol) I also developed severe sleep apnea. That is better only because of the use of a CPAP machine. My family thinks I am so much better, but really that is because of being able to sleep again. They just do not understand why I can not walk my way out of this, throw away my cane, and get on with life. Even with sleeping well now, I still must "ration" my energy to get through each day as I have very little stamina and tire easily.

Doctors have been of little help. Especially the diabetes doc that put me on it in the first place. I saw him for a check up this week and he will not even touch on the statin subject. When I brought it up, he changed the subject quickly. I suppose he is tired of hearing about it, but not nearly as tired as I am of living like this.

I was only 43 when given the statin for cholestrol level of 223. I am now 47, but I know people in their 80's that get around better than I do. Very depressing, to say the least.
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Neuropathy Continues

Postby Granny102245 » Fri Oct 21, 2005 1:58 pm

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.
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Postby SusieO » Fri Oct 21, 2005 8:17 pm

Dee; I took 10mgs of Lipitor for almost three years, but not faithfully everyday. I stopped taking it cold turkey - one year ago this month due to the fact no one had any idea why my legs were always swollen, I could not even touch a finger to my skin it hurt so bad I would cry and I could not walk without having a lot of pain and weakness. It then started making its way on up my body to my arms and my chest as well as not being able to think straight as well as my always feeling so tired and run down with little energy.

(Since stopping the Lipitor the swelling is just about gone only on rare occasion like when I travel my legs get almost twice as large as normal and my arm/chest pain are much better, but my legs still hurt and are so weak that I use a cane quite often) and I have become a hermit who stays in the house as it is far easier than walking around and feeling weak. Most nights I am in bed before 8 p.m. because of being so tired and run down.

One morning I woke up and heard a voice say "go to the computer and look up side effects of Lipitor" and there it was in black and white staring me in the face - all my problems were from the Lipitor.

My family doc will listen to me when I say I feel it is from Lipitor yet there is not much he can do. He sent me to a Rheumy and he said there was nothing wrong and to just adjust my way of living and that why would I have problems from Lipitor if I was not on it!

I am now at a Neurologist and all blood and urine tests are fine. I go Monday for brain scan results (family doc said it may be MS and I do agree many syptoms are the same as MS, but my heart tells me it is from the Lipitor) and I feel the results will be normal.

I would like a muscle biopsy as I feel I have muscle damage as well as brain damage; many days I can't get the words out yet they are there in my mind or I say the wrong word.

My heart doc also feels it is NOT from the Lipitor as I no longer take it.

I am so tired of the doctors saying "this can't be from Lipitor as you no longer take it". The damage was done - why won't they just say so and at least give us the diagnosis of damage from a statin...I get so tired of people saying "why do you use a cane and yet some days you can walk just fine - what is wrong and why can't the drs find a cure?" All I can say is some days my legs are better than others just like my brain and that no one will listen to what I feel is wrong.

It really is frustrating and I am about ready to give up on doctors until someone files a law suit against the makers of Lipitor and we can all jump on board and then be told "yes your problems are from taking this evil drug"!

I am only 48 and my 80 year old Mother is in far better health and can out walk me any day!

Sue
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Postby Dee » Sat Oct 22, 2005 1:37 pm

Sue,
I just read last week that a class action suit is being filed against lipitor on behalf of women, the elderly, and insurance companies that paid for the drug for those two groups. It is based on false marketing as Lipitor was never proven to help those groups (women or the elderly) and actually was found to cause 10% more heart attacks in women.
At this point I think they are just after refunds of the cost of the medicine, but I would think anyone in these groups that also got messed up from taking it would eventually have a pretty good case. I can't remember what group is filing the suit, but it is a consumer type group. If I can find the info, I will post it here. Otherwise I'm sure it will show up on the various statin boards.
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Postby Dee » Sat Oct 22, 2005 1:45 pm

Granny,
My weakness hit me all over. That is when I developed sleep apnea, all at the same time. I guess the muscles in the neck/throat are affected. Also my legs turned bright red from the knees down and swelled up. It took 6 months off Pravachol for the swelling to go down, and like Sue, mine returns now and then. The redness has gotten less intense and it covers 50% of the area it used to. The soreness is better, too. So, there are some improvements, but they are sure slow. My biggest wish is to just get up and walk again, whenever and where ever I want to.
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Neuropathy caused by statins

Postby Les » Thu Oct 27, 2005 12:26 am

[color=blue][/color]
Hi , my name is Les .In May of '04 , I developed neuropathy, while on Crestor . I went off , it went away, but I let the cardiologist talk me into taking Pravachal . Almost immediately, the neuropathy returned . I got into a terrible heated argument with the cardio, and fired him on the spot, after he accused" us people that are chronic pain sufferers of always trying to blame it on something ! " I'm in pain 24/7 . I take Darvocet , and Lidocaine ointment to rub on my feet . I'm sorry for all of you that are suffering too, from this horrific disease !
Les
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Postby Grannygood » Thu Oct 27, 2005 9:32 am

Everyone here has very good information, I am suffering from neuropathy for almost three months, I took Lovastatin for seven months. My doctor the same doctor that perscribed the statins told me I had spinal stenosis, then it was herniated disk, then MS. He sent me to a neurosurgeon who wanted to operate on my back. Then I found your web site, and I had to tell him it was the statins. He did take me off of them and told me it would only take seven days to get out of my system. He's craze, the neuropathy has left my hands and face, but my feet they still feel like there not there. I read your posts it seems like the neuuropathy takes a very long time to go away. I just so grateful there are places where people have the same exerperience I am having and now I know I am not craze or a hypochondriac.
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Postby harley2ride » Tue Dec 06, 2005 12:34 pm

I'm a 49yr old male, and I only took the 10mg dose of Crestor for 35 days. I had to stop due to the severe myopathy, myalgia, and neuropathic damage to my muscles. That was in Feb. 2004. I am still slowly but surely getting worse. I've been taking COQ10, L-Carnitine, and Fish oil at 1000 - 2000 mg's a day, along with 500mg a day of magnesium. It helped a bit at first, but I have continued to get worse. I'm currently in a trial with natural Anabolic Steroids to see if that helps. All the muscles in my body have been affected by this. I get muscle spasms off and on which last for hours. I urge anyone affected by this drug to email the FDA, and the AMA to register their compaints with this drug. I have saved over a dozen people who heard of my condition, and when they started having muscle pains, they immediately stopped taking the Crestor. Fortunately, they have recovered and found other medications which did not cause them problems.
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Postby carbuff » Mon Feb 13, 2006 4:42 pm

Have any of you experienced loss of muscle in your hands, severe twitching, or tired arms?
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Postby harley2ride » Fri Mar 10, 2006 11:14 am

Okay. It has been two years since I stopped taking statins. That was after being on 10mg of Crestor for only 30 days. Despite seeing numerous specialists, spending thousands of dollars on tests and medications, I have continued to worsen. I have frequent fevers, severe muscle pain and spasms, high white blood cell count, and my body temperature keeps dropping. My leg muscles are cramped and sore constantly. A few months ago it was running around 98.3. Now it is running around 97.0. None of the doctors has a clue what to do next. I've done the coq10 with fish oil, magnesium, l-carnitine, tried various steroids, tried l-glutamine. No matter what I do, I continue to slowly get worse. I have all but lost use of my left arm due to the constant pain, and cramping. I have all the symptoms of Rambomyoloysis, yet my urine test comes back negative. Whatever this stuff does to your muscles and neuro, is very nasty, and apparently doesn't reverse itself. I have one option left, and that is to go to the Universy of Salt Lake medical center, and see the Neurology specialist there, and undergo another biopsy, another emg, and god knows what other tests. I really hope they can figure out something this time. If not, I'm giving up. No more doctors, no more tests.
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Postby carbuff » Fri Mar 10, 2006 11:23 am

I am so sorry to hear about all that you have gone through. These Statins truly have a terrible effect on the body.

My mother is also scheduled to go to see the Neurologist at Univerisy of Michigan hospital, but has again rescheduled for a later date. After her first EMG she experienced severe muscle twitching for weeks. Have you ever experienced anything like that after an EMG?

How about the muscle and use of your hands? Has that effected you in any way?

Thanks.

Sincerely,
Jamie
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Postby tex62 » Mon Mar 13, 2006 10:39 pm

Harley, Best of luck to you as you go to the University Medical Center. My husband made some improvements within weeks of stopping Zocor and Tricor, but the pain in his hands, arms, and shoulders continued to get worse for a while. It took a lot of detective work to identify the things that made symptoms worse. We discovered that coffee was one of the biggest offenders, but tea seemed to be okay. Alcohol seemed to create setbacks, and exercise in any form caused increased swelling and pain. Previously, he had been very active, but had to give up all forms of activity for about three months. After two months, he increased his CoQ10 to 1350 mg/day. About a month after that, his improvements were rapid. It's been 4 months since stopping the drugs. His recovery isn't complete, but is GREATLY improved. He has returned to golf and exercise and hasn't experienced any pain as a result. He was never a heavy coffee drinker, but has been able to drink coffee again, without problems, as well as moderate wine and beer.

Let us know how your visit in Salt Lake goes. Wishing you the very best.
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Postby harley2ride » Wed Mar 29, 2006 8:23 pm

Well, so much for the visit to Salt Lake. The neurologist at University Hospital made me feel like it was all in my head. First he told me that I could not have developed the allergies that I have to two different pain medications (even after I explained to him that I tried them three other times with no other medications, and had the same allergic reaction. Then he tried telling me that I haven't really lost any strength. Humm... Two years ago I was benching 160, leg pressing 400, curling 110. Now I can barely bench 60, leg press 200, and curl 40. After 3 1/2 minutes on an excercise bike, my legs give out completely. They just stop. Two years ago, I was riding exercise bike at setting 3, going 6 1/2 miles in 14 minutes. After that I was able to play basket ball. And when I told him that 6 months ago, I was diagnosed with severe myopathy and neurologic muscle damage at Scripps Memorial, he said they must not have been valid tests. I'm starting to wonder if this doctor is funded by Astra Zeneca.

It's frustrating enough to have this problem, let alone, have doctors tell you that what you are saying is happening to you, can't be. I guess it's just my imagination that I wake my wife up with my moaning 3 times a night because I moved or started having muscle spasms. Just to get to sleep, I have to take Ambitriptin, Restoral, and Darvocet. Even then it takes about two hours before I can get to sleep. Then in the morning, I'm dragging butt until around 10:00am. It's just a coincidence that this all started within 8 days of starting on Crestor.

While he was giving me the EMG, all muscles reacted pretty much the same, except for my left arm which has been extremely painful and been having spasms and cramps almost constantly. During the EMG, even at rest, it was clicking like a geiger counter with uranium. The doctor had the nerve to tell me I was making it do that. Gee. Why didn't I do the same thing with the other muscles he tested. There goes another $5000.00 out of pocket, for a doctor to scratch his head and say I need more tests.

I hope that you all have better luck with doctors than I'm having. This really sucks.
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Postby tex62 » Thu Mar 30, 2006 12:09 am

I think most of us who have suffered statin side effects have experienced “rejection” from health care providers even though they can’t find any other cause for the problems. This is SO-O frustrating. Hopefully the results of the UCSD study with Dr. Golomb will be published soon and will gain appropriate attention among medical professionals. I’m so sorry that you had such a bad experience at your recent doctor’s appointment, and most of all that you are still in such pain.
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Postby carbuff » Thu Mar 30, 2006 8:38 am

I feel for all of you guys and gals sooo much. As most of you have seen my posts...my mother is also suffering from the adverse and terrible side effects from Statins. After your EMG did anyone notice extreme twitching in your muscles? Two months after my mom's EMG she noticed extreme muscle spasms. Felt like crawling up and down her arms. Now the twitching has subsided and improved quite a bit. She is scheduled for another EMG in May and is scared she will have another episode of the twitching for months afterwards. She also ran 4 miles prior to her test (this was while she was still feeling good and exercising). Could this have effected the results of her EMG?

Wish you all the best...Try to stay strong.

-Jamie
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Background

Postby GWardMD11 » Sun Apr 30, 2006 1:10 am

Dee, and Harley2ride...

Can I ask what your profession is or has been for the last 15 years? And also that of your spouse? Generalities are ok. I have recently 'tripped' onto some information that might enlighten you depending on your background. Depending on what your answer is, I will want to contact you directly (no, I'm not selling anything!) to explain.
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Medical Center Advice

Postby Charles Wilson » Wed May 03, 2006 9:56 pm

To all who have been to medical centers for help.

I no longer go to any center that accepts grant money from the pharmaceutical companies. I learned the hard way. I made three trips to Ohio State and EVERY test they conducted was normal except for a slightly elevated CK. The doctor refused to address the possibility that Lipitor could have caused my neuropathy and went as far as to say that "You can just get it." Just to get in a dig, I told the doctor that I haven't used any public restrooms in a long, long time.

For those of you who have experienced the "doctor brush-off" it is time to quickly move on and find a doctor in your area who is "awake" to what is happening. Look for a support group through the Neuropathy Association. My support group works hard to find good doctors. By the way, after some simple research (which I regret I didn't do at the beginning) I discovered Pfizer pours Millions into Ohio State and even provides assistance for the hourly employees' insurance. The university could never raise that kind of money through the private sector and it then becomes easy to see why they will not admit what is going on.
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