Lipitor & Neuropathy?

A message board to discuss personal experiences of Lipitor and its effects.

Lipitor & Neuropathy?

Postby lcblanton » Sun May 06, 2007 12:35 am

I was on 10 mg of Lipitor daily for 10 yrs due to cholesterol, lipids, heredity, bad ratio, etc. Prescribed by US Navy Flight Surgeon. After military retirement, civilian physician prescribed 20 mg of Lipitor daily. Remained on 20 mg for 2 more years with good results. Then started burning in 2 toes on my right foot. Podiatriast suggested problem as possible Type II diabetes neuropathy. Regular physician did workup and confirmed Type II. He sent me to Endocronologist who prescribed aggressive meds, increasing my Lipitor to 40 mgs per day, 15 mgs of Actos per day, and 50 mgs of Cozaar per day. Blood Sugar results well controlled, but problem was more neuropathy in the right foot, followed by neuropathy in left foot after 6 months. Also my ears have been ringing for 4 years but I figured that was due to my hearing loss/damage from being a US Navy Pilot for 22 years (around jet engines with lots of high frequency hearing loss in both ears). My current physician who sees over 2000 diabetic patients yearly, said she thought my neuropathy was excessive for my well controlled Type II Diabetes, so she sent me to a Neurologist for testing in my legs and feet. He determined that he was not sure why I had so much neuropathy, but saw minor to moderate nerve damage in the left leg but not the right due to football injuries and probably due to my running/jogging for 35 years. Bottom line is neither my physician or the neurologist had a good explanation for my neuropathy. Now I found this website telling me it could be due to my Statin Drug intake (Lipitor in my case). Wow, I am surprised. Anyone else have something similar to my situation? :?:
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Postby Brian C. » Sun May 06, 2007 1:26 am

If you look into the biology of HMG-CoA reductase inhibition, the statin mechanism, you will see that dis-ease will be the inevitable outcome since processes vital to cell health are compromised. The time-scale for dis-abling symptoms varies widely between individuals, as indeed do the symptoms themselves.

It is not unreasonable to claim that statins accelerate the aging process as well as cause degenerative disease.

In my case the major symptoms (over 17 years of statin use) have been chronic fatigue and weakness allied with muscular pain. Also some memory deterioration. I had to retire at the age of 51 after 5 years of statinisation because of this. Fortunately I did not get the painful neuropathy that you are presenting but I am now no longer taking the Lipitor (off for 5 weeks now)

Welcome to our "club", the support here is terrific!

Brian.
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Postby mgguy » Sun May 06, 2007 1:29 am

ICBLANTON--Many people have experienced neuropathy in hands and feet from statins. Read the posts in this forum on the neuropathy effects of statins. I have burning/stinging in both feet and to a lesser extent hands. I started noticing this after 3 1/2 years on 20mg of Lovastatin (Movacor), and still have it 4 months after stopping the drug. Doctor gave blood tests to rule out diabetes, B12 deficiency, syphilis, etc., and now believes it could be from statins and wants to wait and see if it goes away on its own. From what I've learned from doctors and posts in this forum, it can take several months to notice any improvement (and can even get worse for a time), and for some small number of people it may never go away. The main thing is to be patient and not to get discouraged if you don't start feeling better right away. You may also want to contact Marvin Honashito (spelling?), the project director of the UC San Diego Statin Study. Just Google this and you will get a phone number. He will be happy to explain how statins affects the nerves, treatments (Coenzyme Q10, cod liver oil, etc.), and typical process of recovery. Please post back about your progress.
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peripheral neuropathy

Postby pjallittle » Mon May 07, 2007 1:11 pm

Before December of 2006, I'd defied the odds and had gone merrily along without any concerns, no aches, pains or restrictions, being able to get out and do physical work side by side with people half my age. Just 6 years before, I was the "last man standing" in a very vigorous dodgeball game at a small village in Spain, the majority of the players were in their 30's and couldn't believe that a 65 year old could not only keep up with them but, in the end, be the last guy standing.

But in December 2006, while on a cruise, it became evident to me that I was experiencing bilateral and equal PAD although there were no other signs ordinarily associated with the usual atherosclerotic family of disorders, no shortness of breath, chest pains, no pedal edema. It just seemed to me that perhaps the winter doldrums and lack of exercise may have been the cause.

In January 2007, while sitting in front of my computer, I'd suddenly realized that I was having a TIA. My wife call 911, they were immediately there, meanwhile, I'd chewed and swallowed 3 aspirins. Taking no chances, I quite willingly went to the ER and was attended to promptly.

The ER doctor was an old pro, well qualified and when all was said and done, prescribed Aggranox, altace and LIPITOR.

Within a month, blood pressure normalized and cholesterol levels certified good. But just a week afterward, while walking the dog, I had the tell tale
signs of a tingling sensation in my left little and ring fingers, that feeling of a constant 'gone to sleep' feeling with only slight pain. Reported to the Doctor who just dismissed it as some passing nerve crimp which would go away over time. Nothing said about any relationship to Lipitor.

A month ago, I ceased taking the Lipitor on my own volition but the sensation has not shown any signs of going away. It seriously effects my typing, my fingers seem to have lost their ability to distinguish between Z, A, & Shift Key.

Then I found this website and message board. Unfortunately, physicians seem to have ignored what many of us are experiencing so we're left to resorting to alternative treatments that don't fit into the mainstream of the cardiologist community. So I made my own report to the CDC and NIH

Maybe I should just be thankful that I've made it this far but thought I'd weigh in as just another example of statin side effects.
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Postby cjbrooksjc » Mon May 07, 2007 1:40 pm

Pjallittle: Welcome to the group. Sounds like you got out early. You are indeed fortunate. Best wishes for a full recovery.

Regards,

Brooks
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Re: Lipitor & Neuropathy?

Postby poohhel » Mon May 07, 2007 3:56 pm

ICBLANTON,
I too suffer from unexplained neuropathy in my arms, hands, legs, feet, butt, and neck...also I do not have diabetes ... so my doctors are still trying to figure it out. I have had several test done on nerves and muscles and looking forward (tongue in cheek) to having an MRI done on my spine and doppler studies on my legs in June. This has been a nightmare, especially since it was only 4-5 months ago that I started having problems. I can not exercise much less walk for more than 15 mins before legs and feet start burning to the extreme. I had just quit smoking too when all this started, so in 4-5 months I have put on 35 lbs.

But for a short while, I am going to suck it up (take my pain meds) and enjoy my long awaited for trip to Europe. We booked the cruise over 8 months ago (before all this started) and I plan to fight it out... I will do a little self medicating in Amsterdam if I find a need, lol :D
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Neuropathy

Postby sandybeach458 » Mon May 07, 2007 6:12 pm

I can relate to your Neuropathy. I have it in my left leg from tips of toes to low back. I do not have diabetes either. I too cannot walk for more than 10 minutes before the pain becomes unbearable and my foot swells up. It stinks being like this. Just keep a positive attitude and medicate when you need too. The pain gets worse before it gets better. I know you don't want to hear that, but, brighter days are ahead.

Sandi
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Re: Neuropathy

Postby poohhel » Tue May 08, 2007 12:36 pm

Oh the swelling... Saturday after being on my feet for 3 hours (shopping for cruise :wink: ) my left ankle looked as big as my calf...

I am going on a 14 hour flight this Saturday which even an hour has my legs and feet so swollen... do you think light compression stocking would help???
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Some Additional Info

Postby lcblanton » Tue May 08, 2007 12:49 pm

In case any of you are not aware, you can go to this web address to participate in the UCSD study on Statins - also more info on the effects of Statins.
*http://medicine.ucsd.edu/ses/
Most of you are experienced at this, but this is all new to me. Thanks for your comments.
:D
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Postby cjbrooksjc » Tue May 08, 2007 1:03 pm

poohhel: Compression stockings might help, but try to keep your weight off the back of your legs. If your seat reclines, use it, and try to put as much of your weight on your bottom and back as possible and OFF the back of your legs. Have a good trip.

Regards,

Brooks
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Re: Neuropathy

Postby xrn » Tue May 08, 2007 5:04 pm

Poohel, compression stockings can be useful but there are other things to consider. Drink water rather than alcohol and exercise your ankles regularly. Try not to compress your calves such as when crossing your feet at the ankles and then the top calf is being compressed by the bottom calf. Walk around the aircraft every thirty minutes, where possible. Don't remain in one position for a long time. I know you said it was a 14 hour flight but try to sleep the day before the flight, at home in a comfortable bed and stay awake, if possible duting the flight.

I found the following instructions on a site dedicted to flight health...

1. Always drink plenty of water to avoid dehydration.
2. Do not drink alcohol before or during the flight, as this can compound dehydration.
3.Try and keep your thighs clear of the edge of your seat.
4. Use foot rests as far as possible.
5. Take a brisk walk for half an hour before the flight.
6. Regularly go for a short walk to the restroom to keep your legs moving during the flight.
7. Try a few simple exercises to keep your legs moving, by rotating your ankles, pointing your heel and toe alternately and lifting your knees whilst seated every half hour for a short period.
8. Try and tense your leg muscles as regularly as possible throughout the flight.
9. Wear elastic flight socks (elastic compression stockings) especially designed to reduce the risk of DVT. These are readily available at most pharmacies.
10. The day before the flight, take a low dose of aspirin (100mg – 150mg), during the flight, and for three days following the flight.

*http://www.flighthealth.org/preventing-dvt.htm

(remove the asterisk from the URL before pasting it into your web browser)

poohel, will you be stopping for any time in the UK during your trip to Europe? If so, I could possibly swing by London and say a quick hello to you and your partner.

Kind regards,
xrn
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flight health advice

Postby pjallittle » Tue May 08, 2007 5:28 pm

xl/poohel;

In light of poohel's condition, I doubt that the following advice would be prudent:

5. Take a brisk walk for half an hour before the flight.

This could be disastrous
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Re: flight health advice

Postby xrn » Tue May 08, 2007 5:41 pm

Yes, if a 10 minute walk causes pain, then it wont be good advice. I was just reproducing the data on the site I had linked to. My best guess is that most of the site inhabitants here are very likely to modify every piece of advice to suit their own needs best.

Any activity that can be carried out, is likely to be far better than no activity. If that activity is at the risk of creating excrutiating pain, then that is one's body saying I don't want to do this. To some extent, recovery is about passing barriers. It is not necessarily essential to do so if the path to recovering function is to difficult and fraught with unpleasantness, however, i would submit that it is always desirable to recover as much of one's functionality as possible.

A European vacation appears to be a good plan because it is an unusal and extraordinary event. Also because the impetus to do things that are not available at home will help to increase the range of things one can do, as compared with whatever passes for normal run-of-the-mill living, at home.

Kind regards,
xrn

EDIT: typos :roll:
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Postby poohhel » Thu May 10, 2007 3:10 am

Xrn, Brooks, pjalittle: Thanks for all the insightful and helpful advice. I will definitely be making a point to follow the tips because last thing I want to do is lay up in bed for 3 days recovering from the flight, :lol:

The part about putting weight on butt and back will be difficult-- I broke my tail bone 7 months ago and still have to sit on a coccyyx cushion when sitting in soft chairs ... but I think moving about every 1/2 hr should be fine

Unfortunately, we have to go to Los Angeles, Ca the night before to take the flight to Italy so I won't get a good night sleep in my own bed, it will be at a cheap hotel within 1/4 mile of the airport . . . I will just enlist my hubby to wake me up every 1/2 hour. When we fly-- I fall asleep as soon as the plane leaves the gate -- but my hubby stays "wide" a wake for the duration (hates flying).

Anyway... got my knee highs today... and a neck pillow, too. I have been so excited about going, I have been in overdrive and I have been so busy and distracted that I have been feeling so much better. I am not going to let this "statin ordeal" hold me back from having the time of my life. As xrn said... I will be looking the barriers in the face and be passing them right by :wink:

Oh and Yes, we do make a visit to London. I will check itinerary and let you know when.
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trip tip

Postby pjallittle » Thu May 10, 2007 3:41 am

poohel:

If you still can, may I suggest that you set yourself up with wheelchair assistance at the airports? My wife had suggested this to me before going over to Hawai'i for a 10 day cruise, but I declined. To my very good fortune, someone had abandoned one partways to the Gate or I'd have been in big trouble.

Aside from the bothersome peripheral neuropathy brought about by Lipitor, I've also got PAD and that's really slowed me down. Those long walks in the airport can really be grueling, given your multiple conditions, every little measure that's available should be taken without hesitation.

BTW, a good exercise for you while on the plane but don't overdo it. When you get a chance to get down to the rearmost part of the plane, rest your hands on the last row seat and do some up/down lifting exercises, feet together, then lift onto ball, down flat, up again, perhaps 50 to 100 times.

Sounds like a great trip.
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Postby carbuffmom » Thu May 10, 2007 7:00 am

Poohel:

Have a wonderful trip! You deserve it. Excitement can overcome the pain. Just think about having a good time. Let us know how it goes when you return.

DEB
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Re: trip tip

Postby poohhel » Thu May 10, 2007 12:57 pm

Thanks pjallittle: I have already made those reservations :D My hubby actually suggested it a couple weeks ago so I am all set. How did you have PAD diagnosed? Because this is one of the things my doctor first mentioned and wants to check it out when I get back from trip. I love this exercise you mentioned, I do that almost everyday especially when I know I have to get walking... hahaha.

Thanks for your encouragement and wishes, I will check back in when I get back. :wink:
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Postby poohhel » Thu May 10, 2007 12:59 pm

Thanks Deb... Oh I so plan to have a lot of fun... I will touch base when I get back and I will try to post some pictures online of the beautiful scenery (of course, I won't be in them, haha)
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Re: trip tip

Postby pjallittle » Thu May 10, 2007 1:45 pm

I spent an entire career in the health insurance industry so became very familiar with the good, bad and ugly of people, including doctors and hosptals, overutilization and the fraud practiced by so many of them.

So when I began having the symptoms, I knew what they meant, just as when I was experiencing the little stroke (TIA), just based on prior experience.

The validations range from the symptoms themselves, tentative diagnosis is usually based on pulse readings at the ankles but the more conclusive tests are ultrasound readings (Doppler) which map the blood flow through visualization, these will show the areas of obstruction. Origins are premised upon atherosclerosis. Thus the Lipitor. The technician will run the test from hip to ankle, then get you to do the "exercise" so another reading can be taken to compare "at rest" vs "activity"

This used to be known as arteriosclerosis obliterans, has now been redescribed as PAD...peripheral artery disease... or PVD...peripheral vascular disease. More often than not, the pains hit you at the same time in both legs and will gradually ease with rest. This is known as "bilateral and equal' in medical parlance. If you're effected only on one side, that's indicative of more atherosclerotic buildup

Hope this helps.
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Postby cls » Thu May 10, 2007 6:27 pm

Poohhel, I forgot to say have a good time on your cruise.

Connie
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