severe muscle pain..

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

severe muscle pain..

Postby suffering » Tue Apr 11, 2006 4:40 pm

Hello all, I am a 43yr old male and have taken Liptor for approx 6 1/2 years with no issues at all until a few weeks ago.

I woke up feeling sore with flu like symptoms.
That night and for the next 2 weeks I lived on tylenol and advil to control the severe muscle pain still thinking it was some viral infection but had no other symptoms.

Went to emergency room twice in a span of 2 weeks, told doctors I was on lipitor and they tested for liver issues and said all was fine and to continue the lipitor 20mg.

Finally got an appointment with family doctor told him of the lipitor side effects and he suggested I stop lipitor for 10 days.
After 8 days I saw him again and he said to stop for a month.

It has been 4 weeks since the start of the severe muscle pain and 13 days today with no lipitor.

Can anyone answer a few questions..

How long this will last, although it is not as severe as at first but still fatigued like I ran a marathon and lost.
But I am feeling the extreme exhaustion and now annoying pain instead of severe.
Will it go away in time?
Will my muscles naturally heal over time without the lipitor intake?
Or are my muscles damaged now and I will suffer from here on in?

Obviously after finding this forum I sholud not take lipitor and find a natural alternative correct?

Hope someone can help, thankyou in advance.

Cheers
suffering
 
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Reply for "suffering"

Postby sos_group_owner » Tue Apr 11, 2006 11:27 pm

Hello Suffering and Welcome to the forum,

You doctor most likely did a liver function test. Right ?

Doc also needs to do a CPK (Creatine Phosphokinase) test. When a muscle is damaged, CPK leaks into the bloodstream.

CPK is not foolproof. It can come back negative, but there is still muscle damage. The doctor would then need to do a muscle biopsy.

Dr Paul Phillips of Scripps Mercy Hosp in SanDiego, has a website and has done extensive research on statin side effects:
ww.impostertrial.com/contact.htm

Dr Phillips outlines the tests necessary to determine statin muscle damage. Most comprehensive is under "Information for Physicians".

If you have not been supplementing with CoQ10 while taking Lipitor the past 6 1/2 yrs, your side effects are due to CoQ10 depletion. Start taking 100 to 200 mg daily. CoQ10 can lower BP so if you have low BP or are taking BP meds, monitor your BP while increasing CoQ10 dose.

Please read these articles by Dr Graveline...
Muscle Pain and Statins:
http://www.spacedoc.net/muscle_pain_statins.htm
Statins and CoQ10 Deficiency:
http://www.spacedoc.net/statins_CoQ10.htm
Statin Alternatives:
http://www.spacedoc.net/statin_alternatives.htm

Statin Alternatives:
These items reduce and prevent inflammation and
have the same anti-inflammatory affect as 20 mg's of Lipitor
(atorvastatin), without side effects.
(i.e. anti-oxidant, reduce platelet stickiness, controls homocysteine)
* buffered aspirin - 81 mg
* CoQ10 (Coenzyme Q10) - 100 to 150 mg (those with cognitive issues
may need to take doses as high as 1,200 to 1,500 mg daily)
* folic acid - 400 to 800 mcg
* B6 - 80 to 100mg
* B12 - 200 to 250mcg
* Omega 3 (fish oil or cod liver oil) [ There is no upper limit]
Cod liver oil has the added benefit of vitamins A & D.

Note: "Statin Alternatives" are not designed to "lower cholesterol", because "cholesterol is not the problem".

The problem is not cholesterol, it's "inflammation". Factors like homocysteine, Lp(a) - Lipoprotein (a) and hs-CRP (high sensitivity C-reactive Protein) are much better at predicting the risk of heart disease and stroke.

Inflammation risk factors:
* Homocysteine - optimal levels - 6.2 µmol or less
* hs-CRP High Sensitivity (C-Reactive Protein)
0 - 0.9 - Low Risk
1.0 - 3.0 - Moderate Risk
3.1 - 10.0 - High Risk (twice the risk as 'low risk')
* Lp(a) - Lipoprotein (a) - 25 mg/dL or less

The one benefit of statins is that they are a potent anti-inflammatory. The fact that statins also lower cholesterol is irrelevant.

Fran
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Lost in terminology....

Postby suffering » Wed Apr 12, 2006 7:55 am

Thankyou for your response Fran, I appreciate your patience and advice.

I assume the liver test was the liver function test as it was the normal testing done every 3 to 6 months or so.
I don't think a CPK test was done, I was in the middle of changing doctors so my records are in transition.

I do take Altace for high blood pressure so I guess I should consult the doctor before taking the CoQ10 correct?
The pain now without the lipitor after 14 days is a 2 on the scale of 1 to 10.
A few weeks ago it was a 9.5 until the tylenol took effect, now tylenol is only required evey couple of days or so.

As far as the other links you have posted I did read but i'm lost in the medical terminology. Just can't seem to wrap my head around it.
Can you try to explain it to me without the medical terminolgy?

Am I correct in saying the inflammation is caused by the lipitor or the lipitor lowerd my CoQ10 levels and caused the inflammation?

Will my pain go away on it's own in time once my system repoduces the normal amount of CoQ10 or will I have to suppliment from now on?
It appears the problem is slowly going away without taking any other medication or suppliments due to the pain level slowly dropping correct?

Sorry for all the questions but i'm lost here in the medical terms.

All your help is apprecated!

Cheers
suffering
 
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Re: Lost in terminology....

Postby sos_group_owner » Wed Apr 12, 2006 5:30 pm

Q: I assume the liver test was the liver function test as it was the normal testing done every 3 to 6 months or so.
A: Yes

Q: I don't think a CPK test was done, I was in the middle of changing doctors so my records are in transition.
A: This test is essential if muscle damage is suspected and severe muscle pain does indicate that muscle damage is occurring, anywhere from minor to permanent.

I encourage everyone to keep a good medical diary, especially when you start taking a new drug. It's easy for us to loose track of events like "when pain started", "have trouble sleeping", etc.

Q: I do take Altace for high blood pressure so I guess I should consult the doctor before taking the CoQ10 correct?
A: Be prepared for your doctor to tell you CoQ10 is NOT necessary.
The good news about CoQ10 is you might not have to take Altace anymore if CoQ10 lowers your BP. My husband was taking 2 BP meds and only takes one now. Due to cognitive side effects from statins, he's taking 600mg of CoQ10 daily.
Most traditional doctors know little about nutritional supplements... probably one reason they don't recommend them very often.

Q: The pain now without the lipitor after 14 days is a 2 on the scale of 1 to 10. A few weeks ago it was a 9.5 until the tylenol took effect, now tylenol is only required evey couple of days or so.
A: That's excellent news that your pain is subsiding.
Don't be afraid to take CoQ10, it has very few side effects... it doesn't always lower BP, but I do like to caution people that it can.
These are the infrequent side effects: Nausea, diarrhea, and appetite suppression

Q: As far as the other links you have posted I did read but i'm lost in the medical terminology. Just can't seem to wrap my head around it.
Can you try to explain it to me without the medical terminolgy?
A: I understand where you're coming from. When I started my research 2 years ago, most of what I read was way over my head. Dr Graveline does try to bring it down to an "easy to understand level", but some terms are very "medical".

Q: Am I correct in saying the inflammation is caused by the lipitor or the lipitor lowerd my CoQ10 levels and caused the inflammation?
A: Lipitor actually reduces inflammation, BUT at the same time depletes our CoQ10. Statins use the same path that our body uses to metabolize CoQ10.

Inflammation occurs due to risk factor OTHER THAN cholesterol. Cholesterol is not the bad guy. The "bad guys" are factors like:
* homocysteine
* Lp(a) - Lipoprotein (a)
* CRP - C Reactive Protein

The main problem is that most doctors test cholesterol ONLY.

It took me several years to convince our Cardiologist to test my husband's homocysteine, and when I requested the other 2 tests, Cardio said, "Well, that's of no use. We already know your husband has heart disease."
It's this type of attitude that has created the situation of most adults being prescribed statins and all the people that are now experiencing serious to life threatening side effects.

Inflammation is the problem, NOT cholesterol.

Q: Will my pain go away on it's own in time once my system repoduces the normal amount of CoQ10 or will I have to suppliment from now on?
It appears the problem is slowly going away without taking any other medication or suppliments due to the pain level slowly dropping correct?
A: It's very possible that your pain will subside completely on it own.

The next problem that you might face is that your doctor will want you to take another cholesterol lowering drug. You need to insist on tests like CPK and/or a muscle biopsy to rule out any muscle damage. Anyone that has the slightest amount of muscle damage should never be rechallenged with a statin drug. The incidence of more severe side effects is the end result of continutally bombarding someone with several different statins. AND once side effects do occur, they may be permanent.

Again, Inflammation is the problem, NOT cholesterol.

Additional Info:
There are many foods that contain CoQ10:
* fresh sardines and mackerel
* the heart and liver of beef, pork and lamb
* meats of beef and pork
* eggs
Plenty of vegetable sources of CoQ10:
* richest currently known being spinach, broccoli, peanuts, wheat germ and whole grains -in that order (Although the amount in size is significantly smaller than that found in meats. Also, it is important to note that these foods must be fresh and unprocessed (no milling, canning, freezing, preserving, etc.), plus grown/produced in an unpolluted environment to be considered viable sources).

As I mentioned in my previous post, the items below control inflammation, are potent anti-oxidants, reduce platelet stickiness, and without side effects.

* buffered aspirin - 81 mg
* CoQ10 (Coenzyme Q10) - 100 to 150 mg (those with cognitive issues
may need to take doses as high as 1,200 to 1,500 mg daily)
* folic acid - 400 to 800 mcg
* B6 - 80 to 100mg
* B12 - 200 to 250mcg
* Omega 3 (fish oil or cod liver oil) [ There is no upper limit]

If you need additional info, you can post here or clink on "email" at the bottom of this post.

Fran
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Muscle pain

Postby Ray Holder » Thu Apr 20, 2006 3:22 pm

Dear suffering

As one who has been there before, but at 80 years of age and fortunately no pain but severe wastage, I suggest you start Q10 straight away. you must be careful to watch out for signs of falling blood presssure, such as feeling a bit faint, and reduce your tablets a little to compensate. This is becaused your heart will be stronger and has enough energy to fill more fully and reduce back pressure.
I was advised to take 2x100mg Q10 daily, as oil based capsules,and this should halt problems,in a few days, but your supply of L carnitine may have been affected, and that causes muscle wastage, in my case the CPK test was less than twice normal, but wastage was severe over 3 years. Please see my posting on this page, and look at Darrell's posts.
See how Q10 works, but keep Lcarnitine in mind in case it does not bring you right back to strength
Ray Holder
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Postby harley2ride » Fri Jul 07, 2006 1:36 pm

After two years of this muscle pain crap, I have noted something. After multiple times of taking 4 days off in a row from work, I have noticed that by my 4th day off, I feel almost human. After about 1/2 day back at work, I'm right back to where I usually am (hurting) and tired. And my job is pretty easy, as I'm a computer operator and I'm not doing anything all that physical. The weekends where I'm only off for two days don't seem to amount to any change in how I feel, but 4 days off does make a huge difference. And it's not just the muscle pain, but the fatigue as well. On those 4 day weekends, my fatigue level is much better.
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Postby Darrell » Fri Jul 07, 2006 3:35 pm

Do you do a lot of standing and walking in your job, harley2ride? I found that just standing and doing light work in a small kitchen was just as bad for my leg pain as walking and doing more-active things. Before L-Carnitine, just standing to make dinner and standing to clean it up would require quite a long recovery period.
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Fatigue

Postby Ray Holder » Fri Jul 07, 2006 3:57 pm

Are you still taking only 900mg of carnitine a day? I expect you need a lot more if you run out of steam like that, it will be taking the 4 days to build up your reserves again. I know I am a special case, having lost, from polio, a lot of muscle which could use glucose for energy, and so need more use of fat, but you need carnitine in proportion to your energy use to enable fat to get into the muscle mitochondria to be "burned" to create that energy, molecule for molecule.
I am currently a taking a huge 6 grams a day, but I know others who had to raise their dosage towards that level to last the day out.
I should try 1500 rising to 2000 mg a day over about a week, to avoid any bowel problems, although Darrell seemed to get away with 2000 from day one. W Australia Polio Network recommend increasing gradually until your bowels start to object, and then dropping back by say 250 mg, as a simple way of finding out what is right for you.
Hope it gives you relief. -- Ray
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L-Carnitine Dose

Postby Darrell » Fri Jul 07, 2006 4:45 pm

Whoa, Ray! I didn't start at 2,000 mg/day. I started at 1,000 mg/day and it was divided into four 250 mg doses. I typically take 2,000 to 2,500 mg/day now -- 1,000 to 1,500 mg in the morning (depending on how active I expect to be) and 1,000 mg in the late afternoon.
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Carnitine dosage

Postby Ray Holder » Sat Jul 08, 2006 1:40 am

Sorry Darrell, memory glitch, not TGA, but AD related!!
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Postby harley2ride » Mon Jul 10, 2006 11:34 am

I may be a little different from some of you, as mine has turned into Mitochondrial Myopathy (which is a form of Muscular Distrophy). My new doctor said that he didn't think that additional Carnatine would help, and instead asked me to start taking Creatine and NADH twice a day. He also wants me to change my diet to a more sugar free/fat free diet. So, I will give his suggestion a try, and then after some time, try upping the carnatine and see if there is much difference. But I have to change one thing at a time, or I'll never be able to tell what is making a difference, and what isn't. I know that a Demoral IV bag would make me feel a LOT better, but then I wouldn't get anything done except sleeping and drooling alot. :)
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