parkinson's symptoms after statins

[don zim]

My husband, who already had a problem with depression and had experienced several severe emotional traumas related to family problems, had a cholesterol level of 200. After several years of resisting the physician’s advice to take Lipitor, he finally yielded and took it. Within a short time, he was confused, forgetful and shuffling...none of which we associated with the drug at the time. After four months, he was concerned that his memory problems were Alzeimer’s so he consulted a neurologist who took pictures and said that it was not Alzheimers but may be the beginning of Parkinson’s. At the same time his cholesterol levels came back and when I discovered that it was 160, I suspected immediately that his confusion was related to the low cholesterol....since every cell in the brain has to have sufficient cholesterol to function. I looked up Lipitor on the web and read about the mental confusion/muscular side effects. Don stopped the drug immediately and the confusion went away except when he is really tired. His movement problems did not go away, however, they got worse. He had no pain but his body movements became Parkinson- like and his energy level deteriorated drastically, to the point where he could not do the slightest things like carry a light bag of groceries from the car to the kitchen. His depression worsened. When i heard ‘PD’, I immediately put him on 1200mg. co-enzyme q-10, what they were using at the time at Columbia Pres. in NYC. His gait changed a little and he felt better. Later, I doubled the dose to 2400 and his shuffling stopped and he was able to reach in his back pocket for his billfold. A small victory but a victory nonetheless.

We decided to go to Columbia Pres. Movement Disorders. In preparation, we got all Don’s medical records and looking at the dates convinced us that the Lipitor was the culprit. Not that Don didn’t already have depression, not that his posture hadn’t already deteriorated somewhat, not that he hadn’t already had a carpal tunnel operation.....but he didn’t have overt PD symptoms or the incredible energy loss. By the time we got to Columbia, Don had dragging feet, a hanging left arm, a left arm intentional tremor, faulty balance, some freezing (inability to move foot), difficulty turning, difficulty getting in and out of bed or turning over and depression - all symptoms of PD. Nevertheless, all these symptoms were a bit better than before the Q10. The doc at Columbia told us that he didn’t have PD and CoQ10 doesn’t work that way (apparently the research department doesn’t talk to the M.D. dept.) and that the supplements he was on and the Q10 were a placebo effect. We figure we have a ‘naivete effect’ because we never knew what to expect and were always surprised at changes which occurred.

Don had always been athletic, played high school and college football, worked out regularly for all his life. He had just decided to take up golf since the knees had gotten too old for tennis - from the time we bought the clubs to the second lesson, he had deteriorated to the point where we had to cancel that idea.
Don said he felt like he was dying. It was a peculiar statement but interestingly, the same thing said by two other people I know who had taken Lipitor to their detriment. Later, when we went to Florida for specialized PD treatment, it was that statement that our physician agree with us that it was a mitochondrial trauma, perhaps triggered by statins. PD patients, although they have a lot of problems, don't usually say they feel like they are dying.
Our local neurologist had diagnosed Don as having classic PD. To his chagrin, we resisted the PD meds, which do not heal and are highly problematic, opting instead for glutathione iv's (hence our trip to Florida). While there, we asked for hyperbaric oxygen, not usually used for PD patients because it doesn’t appear to work, but we believed that in spite of the PD symptoms, it was a mitochondrial problem and might be helped. When the doctor heard the statement about dying, he agreed that it might well be a mitochondrial problem and that could be helped by HBOT.

The result in the oxygen chamber (2 atmospheres) was dramatic and tjat would not have been the result if he had just had PD. After the first one hour treatment, he was able to get up and down smoothly and repeatedly in a restaurant booth, something he had been unable to do for over a year. After the second treatment on the same day, he was able to walk backwards on his heels - a neuro test that he had failed that morning. By the end of the week, after 8 of 10 HBOT treatments, he could get in and out of bed easier than I could - that is usually a problem for pd patients. His depression had all but disappeared and we were laughing and giggling. His whole demeanor had changed for the better.

In his estimation, he improved 90% over the time before he began the iv's and HBOT and now is at about 75% (he has had 10 additional sessions at another facility). Even with the regression, he is considerably better off than before when he had reached the point of having a problem using a fork, resorting to sandwiches so he could hold the food.

The oxygen seems to have kick-started his energy. We are now working on developing an exercise/pt regime where the energy output is not exceeded by the energy production. we think that the exercise is critical because it helps get more oxygen to the muscles. We may go for more HBOT but we can't go on HBOT forever; it is too expensive and not covered by Medicare for this purpose. I am not quite sure what statins have to do with depleting this oxygen process but I suspect it is something critical.
I am writing you because I would like to know if you have ever heard of PD type symptoms with statins. Most of the people I hear or read about have muscle pain but Don has no pain; he just looks like he has pain because he is so stiff.

Since I started complaining openly two months ago about Lipitor, I have met 7 people who have had problems - some smart enough to throw it out and a couple who didn’t. These are the two who didn’t:
When my husband told me he felt like he was dying, I knew I had heard that somewhere before. As a result of this whole experience, Don had lost so much weight that he had to go for new clothes. The store owner told me about his friend who had been an extraordinary athlete, even at age 70, who was virtually incapacitated from Lipitor. I had a long phone with the man and he had indeed been one of casualties of Lipitor, with incredible pain and almost bedridden after any exertion. He told me he felt like he was dying when he has these painful sessions.

The second case, a good friend who taught medicine at one of the Ivy’s was put on Lipitor after a by-pass two years ago. I had forgotten about his following trouble but he related it again when he heard we were going to Florida and I was stunned. He said he 'felt like he was dying', had stomach problems and began having trouble getting up and down. Fortunately for him, he was computer savvy and found another person with the same symptoms. She couldn't afford the pills so stopped them, only to discover that the symptoms went away. Our friend changed to another statin and recently went off but his levels went up to 300. He considers going off it entirely but feels he can’t and won’t consider fish oil or anything remotely resembling a supplement....after all, he is a doctor! (he did sell all his pfizer stock though, in anticipation of trouble)
Don is on a lot of supplements, large doses of C, 2400mg. Q10, tryptophan and its co-factors, magnesium aspartate and daily glutathione via iv. He has had acupuncture (very good in Florida, mediocre here). He has just recently begun glyconutrients (will report on that later). He will get a port installed soon so we don’t have to stick him on the i.v. all the time. He gets physical therapy geared not to overtax the mitochondria, does daily water exercises (can no longer swim due to the ‘heaviness’ in his legs) and yoga. His dance card is full every day because we have to be very careful not to over tax his energy level. He also just began (and I am not making this up) massages from a man who specializes in horse massage for race and show horses. The man is a genius who really knows his stuff. He gave Don a crawling exercise to do which has really helped his walking. Actually, I have learned a lot from veterinary sites and we have a brilliant friend who teaches vet science at the university here. She has taught us a lot. Did you know that horses, show dogs and racing camels (yes, true!) are all given tryptophan + co-factors to keep their muscles calm yet still able to perform? They are bred to be highly excitable and hypervigilant so react quickly to stress and it ‘ties up’ their muscles.
At the present time, Don is recovering....slowly. He still walks a little funny and has trouble pulling up a chair and turning over in bed but every day, it gets a little better. We can’t wait for the next massage treatment.
I worry that people will have symptoms other than muscle pain and not make the connection to the drugs. I hope this helps someone else.

marjorie in ga.

[carbuff]

Hi Marjorie,

My name is Jamie. I have been researching Statin Drugs for some time now after my mother has seem to have adverse side effects. She had been on the Statins for 13 years and her symptoms started showing after a switch to Vytorin.

She lost a lot of muscle in her hands, her arms are very weak, her tongue twitches, and sometimes experiences muscle spasms throughout her body. The doctors and neurologists seem to think that it is ALS, but there is no way to completely diagnose her...their suggestion is to just "wait and see if it progresses." She has recently gotten off the Statins and is on a strict vitamin/supplement routine...roughly 75 pills a day! So, far her symptoms have gotten a little better, but not a full recovery. Basically, she hasn't gotten worse.

She was very active like your husband...working out and running almost everyday.

I know you posted this is November. Has you husband been off the statins? Has he recovered?

Best of health to you and your family,

Jamie

[eml256]

Hello Marjorie and Jamie, my husband was diagnosed with Parkinson's disease 1 1/2 yrs ago( age 59 at the time) after being on Lipitor 10 mgm/day for 4+ yrs. 3 months prior to his diagnosis, my niece and I were discussing getting our respective husbands together for golf--we live in different regions of the US (her husband was 56 at the time). We discovered both men were exhibiting the same neuro symptoms. we found both had been on lipitor for 4+ yrs. and in surface researching the drug, discovered it depletes the body of coenzyme q10. In simplistic wishful thinking way, my husband discontinued the lipitor and began taking coq10 @ 100 mgm/day. 3 moths later, the neurologist he consulted for the first time made the diagnosis of parkinson's and stated there were no "traditional" anti parkinson's drugs for early onset patients, but there was a supplement he could recommend that had shown efficacy in patients with early onset Parkinson's--that supplement: coenzyme Q10 @ 1200 mgm/day (reported in a study by Clifford Shults, et al in the Annals of Neurology, 2002). we were shocked and no longer felt it simplistic to associate Parkinson's and statin use. Since that time my husband has begun taking multiple supplements and vitamins (including R+Alpha Lipoic Acid which reportedly helps re-cycle excess coq10 so that it does not become a pro-oxidant). Many of his initial symptoms have regressed--ie shuffling walk, stooped posture, "masked" facial features, though his right hand tremor and some bradykinesia (slowness of movement) have remained, though to lesser degrees. My husband was also an avid exerciser--was a 6 day/week jogger prior to his symptoms development (there is some evidence that those individuals who are/were avid exercisers are more prone to adverse statin effects because of the molecular effects of statins upon muscles)--continues to work with weights and use an elliptical walker 6X's/week as well as taking TaiChi 3X's/week.

when first diagnosed, my husband asked a friend who is a diagnostic radiologist about PET Scan use to determine if one does have Parkinson's--when the radiologist asked why he wanted the scan my husband told him that I thought this was all a statin toxicity to which the doc replied that during the past yr he had consulted upon about 2000 patients, and 40 of those were initially diagnosed with ALS (Lou Gehrig disease) that in fact had a statin toxicity. When my husband inquired how he knew to look for statin use in these individuals, the doc replied that his first patient with swallowing and speech difficulty diagnosed as possible ALS was his wife. If one accesses the MDA (muscular dystrophy assoc) web site, there was a feature "ask the expert"--under the heading of ALS, there were 16 questions and answers printed during a 4 month period of time. 4 of those 16 questions or 25% specifically asked if a statin was associated with the onset of ALS in each individual:http://www.mdausa.org/experts/responses.cfm?id=66

it is of interest that this feature has been suspended, and in fact I had a difficult time finding the site with these questions. there have been no further questions and answers since August 2004--I wrote letters to each of the physicians who had responded to the statin/ALS questions in Aug 2004 pointing out the "coincidence" of 25%^ of the total # of questions asked specifically related to statins and the origin of their ALS disease. Yes, it could easily be coincidence, though could also easily be related instances.

I have amassed a huge # of studies and articles related to statins and effects upon the body--and am currently trying to piece together a coherent "citizen's petition to the FDA" to mandate post marketing studies to determine if statins have a causal relationship to parkinson's disease.

On the Lipitor forum of dr garaveline's site, one woman whose husband developed a neurodegenerative reaction to statins noted he is taking "glyconutrients" also--marjorie, would you mind sharing information w ith me about its use, where to obtain it, etc. and i am vitally interested in hyperbaric O2 treatments. my husband also sees an acupuncturist, now about every 4 weeks, not enough to make a major difference...

I think Lipitor caused Parkinson's in my husband and my niece's husband. Since their diagnoses, i have had a friend whose husband is 50 diagnosed with Parkinson's who had been on lipitor for 2+ yrs....I have also been in contact with a woman who was diagnosed with ALS and continued to consult new physicians until one did extensive EMG testing and changed her diagnosis to "statin toxicity". last i heard from her, she had not improved, but her condition had stabilized for which she was thankful.
we are in hopes many of the neurological effects can be reversed, though there is NO help from the medical community since there is no acknowledgment this neurological condition is related to lipitor. and it may all be coincidental--though without some study, even an epidemiological one--to determine is there is a possible relationship, we will never know, there will be No therapies developed to address damage done by statins, and just guess work therapies on our parts.
thank you both for sharing your stories--madelyn

[carbuff]

Madelyn-

Thanks so much for the reply. I found what you had to say extremely interesting. It def sounds like you have been doing your research. You said you came into contact with a woman who was first diagnosed with ALS, then later it was determined that she was in fact suffering from the side effects of the Statins. Would it be possible for you to tell me more about her symptoms? It would be even better if it would be possible for me to get in contact with her.

I am just not sure where to go from here. I'm convinced that my mother's symptoms are side effects from the Statins. She had been on the Statins for 13+ years and these side effects became worse and more evident after a big increase in her exercising. Where do we go from here? She has an appointment at University of Michigan hospital at the end of the month. Should she even go? Should we wait and see if her symptoms progress? After her EMG she felt like every muscle in her body was twitching and this lasted for some time. Have you ever heard of anyone reacting to an EMG in this way?

I apoligize for asking so many questions...I understand if you can't answer them all. Do you know of any physicians that I can contact that may be able to shed some light for us and help our family? I have been in contact with Dr. Beatrice Golomb, but have yet to get her phone call.

Any advice you could give me would be great as I'm sure you know what our family is going through.

Best wishes for you and yours,,

Jamie

[eml256]

hello Jamie, I have emailed the lady re:statin toxicity diagnosis asking permission to give you her email address. In the meantime, the physician she consulted was Dr. Thomas Kwiatkowski at the Mass General Hospital in Boston. He is in the Neurology department which is (or recently was headed) by Dr. Brown, who is a major researcher/clinician in neurology diseases. If you are unable to contact Dr. Kwiatkowski, you may wish to try Dr. Brown (i forget his first name, though will look it up if you need me to do so). I wish you the best of luck. what a good daughter you are. sincerely, madelyn

[carbuff]

Thank you so much again for the information. Hopefully the woman you talked with that had similar symptoms as my mother wouldn't mind talking to me. I am just curious of what her symptoms were and if she has gotten better.

I went on-line and found both the physicians.

I really do appreciated your help. As you are probably familiar with..some days are better than others for my mom. Its just the thought in the back of her mind that she could have a neurodegenerative disease is very scary and hard to shake. Overall her symptoms are no worse and I'm still hopefull that she will make a full recovery.

Thank you again. Please keep in touch.

-Jamie

[Delan]

My mother is going through hell thanks to the Vytorin she was put on without
being forewarned of the side effects. She was on this stuff for 7 or 8 months.Now she's been off it for several months, still has severe muscle pain swollen joints and is debilitated most in the morning and before bedtime. Three doctors concur its from the statin drug did some tests & little else. One MD put her on physical therapy which doesn't seem to be helping. My mom is getting very depressed (she's almost 80) and the last thing we want is a domino effect from her being depressed & upset on top of being sick. Can anybody tell us about anyone who has fully recovered or has bounced back completely from this nightmare. If you have a success story or advice on anything else we can do other than CoQ10 supplements Please email me at hurlpower@yahoo.com. She could use the encouragement.

[tex62]

My husband has made a remarkable recovery from his use of Zocor and Tricor. His recovery is not complete yet; however, the muscle pain has gone, except for some pain in his shoulders. He once took NSAIDs every 4 hours to control pain, now he no longer needs to take them. His hands were so weak that he couldn't open a twist off bottle top. His strength measurement was about 12 pounds for each hand; now it's around 55 pounds. He no longer gets tired from minor activity and has been able to start working out and playing golf again. I don't know what to attribute his recovery to, but the things he did was to stop all physically tiring activity for about 3 months. He increased his CoQ10 to 1350mg/day and is currently reducing that. Originally he took 300mg of CoQ10, but didn't see any improvement at that level. Several things seemed to make his condition worse that had not previously been a problem, coffee being one of those things. I kept a diary for a while and recorded what he ate and did and when he seemed to have a very bad day, looked through my notes to see if there was any type of pattern. Depression seems to be one of the side effects of these drugs. My husband has always been positive and managed to remain so throughout this ordeal. I think his outlook and expectation to recover was very important. Best wishes to your mom.

[Delan]

That is the first encouraging thing we've heard. I'm sure that will boost my mothers morale. I will also suggest that she keep a diary (and lay off the coffee). Thank you so much!

[eml256]

PLEASE consider emailing Dr. Beatrice Golomb at the Univ of calif. san diego informing her of the adverse effects from statins that you or your loved one is suffering. She is currently compiling a "study" of self reported adverse effects from statins. She will perform a statistical analysis on the results and hopefully publish the findings. The last I heard from her there had been quite a number of neurodegenerative symptoms reported-quite a number of them seemed related to ALS--there were also many complaints of "hand tremors" reported. Please take the time to email her; she will respond and put you in touch with one of her researchers and /or will send the quetionnaire to you. her email address:

bgolomb@ucsd.edu

together we will make a difference in this debacle. madelyn