It too late.....

[damaged]

I've been lurking for over a year...great site, great info.
10 years ago I was a stronger than most, healthy carpenter.
I took statins on and off for 8 years, all the while being told by numerous doctors that I must take them or it was "just a matter of time" until I dropped dead.
When the pain started, I insisted that one of the drugs that were prescribed had to be the culprit, but it was always dismissed. I quit the drugs on numerous occasions, but when the pain didn't leave immediately, I wrongly assumed that maybe the doctors were right. I had no knowledge (at the time) of half life or "wash out" periods.
Long story short - I'm disabled. I can't walk more than 100 yards without extreme pain for days afterwards. I've developed diabetes from lack of excercize...and life as I knew it is over.

I went to see a new doctor 3 weeks ago. Like all of the others before him, he dismissed the possibility of permanent statin damage.
I must have made an impression on him....because I went and saw him again last week, and when I started to show him a study that discussed it, he quickly said “oh....we're well aware of thatâ€Â

[Brian C.]

*http://www.wellnessresources.com/health/articles/more_proof_that_statins_damage_muscles_in_many_people_taking_them/


Brian.

[Cat Mom2]

Hi "damaged"! Your story is classic. I also started on the statins about the same time you did but never assosciated the pain I had or all the other problems with them for about 5 to 6 years.

I was not far from being on disability myself but it was a TV commercial from some law firm for statin drug damage that made me start to question if all my new problems were caused by the statin and get on the internet and start checking it out. That was a July 2006 (I think). I have been off of them ever since and I am sure I was less than 1 year away from being on disability.... and never know why! I was SO stunned and MAD at what I found!

BUT, I have noticed more and more that attitudes ARE indeed changing and more and more people are questioning the benifits outweighing the risks and realize the damage theses things are doing.

What you can do is tell anyone who will listen your story and as you tell them your story, watch the light bulbs go off as they reconize what you has happen to you, is happening to them.

WORD OF MOUTH is a POWERFUL TOOL! We ARE making progress! ATTITUDES ARE CHANGING!

[damaged]

Thanks Brian, Cat Mom2.
As I've said, I've been lurking for quite a while.
I still have so many questions. And I received a newsletter from SpaceDoc today informing of his leaving the cause. In it, he says that he's worn out.
I was sorry to hear that.

Does anyone know if the board will continue to exist? Or if there are any plans (by anyone) to continue moderating?
This really is the only source that I've found covering any type of “treatmentâ€Â

[Allen1]

Hi there damaged,

those "saps" taking Q10 while taking statins may well end up with serious problems like the rest of us, hopefully though, replacing what the statins have stopped their body from producing naturally could save the user from the severe problems that we find ourselves with.

We also know that other vitamins are also needed to help our bodies function because of the statins work and because the cholesterol that would keep things in working order has reduced to a level that is incapable of keeping up with our bodies needs to function the way it should. When your muscles for example are deprived of the nutrients/energy they require, they become weak or tire easily and ache. Taking Q10 and Carnitine along with a whole load of vitamins can temporarily replace those lost nutrients and give your body what it needs to function, a lot of the pain reduces as your body is no longer starved of the energy/nutrients it craves for. Finding out what quantity of Q10 and Carnitine plus vitamins are needed is an individual thing, you may need more than me of one thing etc so you have to find what works for you.


There isn't a cure or a magic pill as yet that is going to take away all the damage that has been done by statin therapy, taking Q10 and Carnitine plus vitamins etc does help, when you stop taking them, your body is once again being starved and the pain returns to its previous level and sometimes worse, it can also take quite some time to get back to the level of comfort/discomfort you had before when you restart taking Q10 etc.

As you know, a lot of aches and pains seem to appear without any reason, this still happens while taking the Q10 etc, I believe that the pain level is worse without taking the supplements and increasing different parts may be beneficial to counteract most problems, the main consideration is where do you stop and how long can you afford to keep this up etc.

Some folk do get better while other folk keep going through phases where one thing improves then another problem appears again and again. There are so many variations ie dose sizes, brand, length of time using and possible disposition to using statins etc that no one knows what the outcome will be until it happens. How on earth the medical community were fooled for so long is a total mystery (apart from the monetary interests that those in the right places certainly made use of).

I wish I could say more, but that is about the size of it, Allen.

[damaged]

Allen1
"Those "saps" taking Q10 while taking statins may well end up with serious problems like the rest of us, hopefully though, replacing what the statins have stopped their body from producing naturally could save the user from the severe problems that we find ourselves with."

Just to clarify....I never meant to imply that those that were already damaged were "saps" for taking CoQ10. But certainly, I was a "sap" for listening to the doctors rather than to what my body was telling me.


*http://www.wellnessresources.com/freedom/articles/the_statin_scam_marches_on/

..............................
"In the new study researchers found that statins activate a gene signal in muscles called atrogen-1. When this gene activates it targets key muscle proteins for destruction. The activation of this gene drives the process of muscle atrophy and muscle wasting. It is induced in cardiac muscle in failing hearts. Why on earth would any person want this gene activated by a drug?"

. "Muscle biopsy found that the atrogen-1 gene was activated, compared to people with severe muscle pain not on statins and controls. They went on to show through various experiments that statins activate the gene. This is extremely bad news for any person taking a statin."

............................


The terrible thing about these findings, is how doctors intend to "adjust" their practices to compensate for these side effects.
I was told "Oh...now we always recommend taking CoQ10 along with the statins".

My point is....by doing this, someone who might normally be warned by the initial pain, and stop taking the statins, will not do so. The CoQ10 will efectively override the normal warning signs that " the atrogen-1 gene was activated".

Imagine the drug company developing a drug to stop hair loss. We'll call it Drug X. Now imagine that we discover that drug X will also activate a gene that will instruct the body to stop producing insulin...... Permanently.

Deciding to suppliment drug X with "a little insulin" and calling this a solution to the problem - would be insane.

I've been trying to work through the stages of loss for a long time now. I've lost the use of my legs. It's hard to "accept" something, when you don't know what you're excepting.

Finally, if we're to believe these studies, I must accept that my DNA has been altered.
My first post was done while in the "anger" stage. I had just read 3 or 4 abstracts that verified my suspicions - only to also read that the "fix" was to mask the pain, and continue to ruin people's lives.
I'm sorry if I came across like a jerk.
And, thanks for the input.

damaged

[Allen1]

Hi there damaged,

you don't come over any different to the way we all do now and then, your initial comment about people taking Q10 and statins could be read two ways, unfortunately it was me who read it in the wrong context and I now know how it was meant to read as in each of the "..." were stages in the therapy leading up to the problems and then supplements.

I also agree with what you have wrote about people believing that that they are now safe because they take Q10 while still taking statins, it is still a gamble as to the outcome, if you are one of the people who could have that gene turned on then Q10 or no Q10 while still taking statins is simply playing Russian Roulette with their health.

Unfortunately it is not just the doctors who are at fault when it comes to taking stains, a lot of the users can only see that their numbers have come down and think that they are doing oh so good at keeping that dreaded cholesterol at bay and can't see any wrong even when it happens to them.

Sometimes us humans are our own worse enemies!

[uncle2blade]

damaged, welcome to the forum,sorry to here of your condition. You mention you've been lurking around for a year. I hope you've been reading profiles of different members. Find the ones that have some of the problems you've had and see if they can help. That is what I did and I have gone from totally incapacitated to being able to led a pretty active life. My story isn't that much different than yours. I was on statins for ten years before I stopped 2 1/2 years ago. Don't give up, keep up the fight.

Best to you, Craig

[Ray Holder]

Hi damaged

The answers to statin damage and Q10's part in it's treatment are not that simple. Statins cause damage by reducing the body's production of not only Q10, but of several other essentials. dolichol, seleno protein, etc, as shown in spacedoc's book.It would seem certain that Q10 shortage leads to shortfall in output of other things such as carnitine, because the energy supply for their manufacture is insufficient.

The basic place for this damage to be felt is in the mitochondria, the minute producers of the energy chemical adenosine triphosphate, which is necessary in millions of mitochondria in virtually every part of the body to provide the power supply for almost all cells' needs. One muscle cell is said to contain 1000 mitochondria. Q10 is essential in the chemical process in the mitochondria to convey sugar or fat through the stages involved, by acting as electron conveyors in raising energy levels to make the chemical changes.

Carnitine has its part to play ay this stage, as fat cannot find its way into the mitochondria unless accompanied by carnitine, which has a second function to sweep up the "combustion" products, otherwisw pain from lactic acidosis occurs. So, muscle weakness or loss, can be caused if it is not present at the beginning of the energy process, or pain will be felt when the "ashes" are not cleared away.

Q10 supplementation can only replace part of the statin reduction of activity in the mevalonate pathway, sometimes sufficient to give great improvement, but as most people have individual problems, not always, unfortunately. Carnitine supplementation will give much help to those with muscle wastage or pain, but again, not always.

Heart weakness is sometimes felt, I have needed both supplements for this and muscle loss for about 7 years, but not as good results lately as anno domini relentlessly moves on.

I believe you are taking 200 mg of Q10, that may not be sufficient, unfortunately there ae few places where you can get Q10 level checked, and you have to resort to trial and error. As you have so much muscle problem, I would suggest you try some L Carnitine, most easily taken as capsules at first, starting with 500 mg daily, increasing by another 500 mg after 3/4 days, and so on. If it helps, don't just continue increasing, but try a few days with extra Q10, say another 100 a day, to see if you get more improvement, if not, after a week or so, drop back to 200 and try a little more carnitine, suck it and see, I'm afraid.

Q10 does not cause problems in an alkaline stomach by getting into the bloodstream to cause trouble, but the lack of acid allows a yeast to grow in the stomach, most undesirabe.

Mitochondrial DNA change is a possibility, but try some of the other possibilities first, no-one can give you a figure for the supplement dosage you need, it will be individual to you, your age, and the amount of damage you have received. I had been taking 1200 mg Q10 and15 grams carnitine daily, but at 88 and having had polio, they are exceptional, and I have now gone over to QH type Q10 and not yet reached a satisfactory state.

Keep on trying,

Ray

[damaged]

Thanks Ray.
This is exactly the type of information that I'm interested in.
You've not only suggested what might help, but explained why.

When I went to a local health food store, I ended up with CoQ10, and Acetyl L-Carnitine (400mg) with Alpha lipoic acid (200mg).
I'll try to eliminate all variables... try taking it, and see what happens.

As to variables.....
As I've said, I recently was told that I'm “pre-diabeticâ€Â

[Ray Holder]

Hi Mike
I feel that Q10 deficiency from statin use results in the onset of diabetes, I saw an article by a Dutch doctor the other day who said that for every life said to be saved by statins, three quarters of that number got diabetes. This follows from the fact that Q10 is needed in every part of the body to provide the energy which it needs for its own function, and the pancreas cannot make enough insulin without sufficient Q10. Some type 2 diabetics are warned to watch their sugar levels when taking Q10 as it improves insulin output and the diabetes medication then drops the sugar level too far, so Q10 could help ward off full diabetes if you have had some indication of a pre diabetic condition. This was so in my case.

Ray

[damaged]

Wow.
Ten years ago, I would visit a doctor once every few years. In the past three or four, I've seen more doctors than I can count.
I think that I've come full circle.

To be very honest (and probably risk offending some), I've always avoided those advocating “naturalâ€Â

[Geebee]

Damaged, if you are willing to try something way out of left field ask your doctor to prescribe a short course of Prednsolone.
I have been on 15mg for several months now and have my life back, last night I rode 50 klm on my bike, before the prednisolone I was barely able to stand on many days.
It has potential severe side effects but it can be monitored, I have been fortunate so far with the only real side effect being furry feeling teeth 24/7, a small price to pay to be "normal" again.
The doctors started me on 25 mg and within days I was a lot better, I have slowly gottten down to 15mg a day but can not get any lower without the symptoms returning, even a 1mg drop will bring the symptoms back.

[gotts1936]

Howdy Mike, I noticed you had a post where you were concerned about Glucophage. My last blood work showed a, so-called, pre-diabetic level of blood sugar of 132 and my GP wanted to put me on metformin ( Glucophage ), after checking and finding out one of the side effects was muscle pain. I told my GP I have muscle pain everyday how will I know if the Glucophage is killing me?

Also, Lactic Acidosis is a rare side effect of Glucophage usage and some of the studies I have read discuss Lactic Acidosis as a possible statin induced process. I check my PH balance often and it tends to be on the acid side ( 6.2 ). So, it made sense to me not to start using Metformin ( Glucophage ).

To be honest, Every week ,I check my urinary output of Ketones, Glucose and acid levels ( PH balance ). Don't ask me why.

gotts

[damaged]

gotts
“after checking and finding out one of the side effects was muscle pain. I told my GP I have muscle pain everyday how will I know if the Glucophage is killing me?â€Â

[David Staup]

Mike,

Basically you want the biopsy to identify (look for) muscle myopothy and mitochondrial myopothy.

*http://www.ninds.nih.gov/disorders/mitochondrial_myopathy/mitochondrial_myopathy.htm

see this site for a description of all myopothies

*http://www.ninds.nih.gov/disorders/myopathy/myopathy.htm

Also read Brooks posts under the thread "a doctor who gets the problem"
Brooks just went through the biopsy and his story is a good example of what you can expect.

one more point...I too was somewhat the stoic (played the hand I was delt without complaint) I too have had difficulty dealing with the emotioms that this evil has evoked. I have found that for me the only way to avoid the despair, anger, and all the other negative emotional effects was to limit myself physically and mentally to goals and activity levels that I could sustain. the roller coaster ride produced by over doing it and then having to stop and recover has more often than not led me to bouts of despair, anger, and just generally bad times.
It is a bitter pilll to swallow but god will give you the streangth to find a balance of achievement and peace if you acknowlege that you're in a different game now and the rules have been changed

Mike, good luck with the doctors and let us know how you fair.
we're all pulling for you

David

[damaged]

Any thoughts on this article?
(forgive me if it's already been posted)

*http://www.natap.org/2008/HIV/112108_02.htm

I found this interesting...........

Does coenzyme Q10 have a role in treating statin induced myopathy?

Reports of myocellular concentrations of coenzyme Q10 in patients being treated with statins therapy have noted increased, decreased, and unchanged levels.

Therefore, the usefulness of this compound in statin-induced myopathy is unclear.

In one small randomised double blind trial, 41 patients taking statins who had muscle pain received either coenzyme Q10 or vitamin E.

After one month of treatment, 18 of 21 patients taking coenzyme Q10 reported improvement in muscle pain, compared with three of 20 taking vitamin E

More studies, though, are needed before coenzyme Q10 can be recommended for this condition.

[sylviak]

Dear Damaged,

The article by Beltowski (abstract posted by Brooks) under the section Treatment answers most of your questions and should convince your doctor. It's about to be published so it is not yet available, but if you give me your email address, I'll send it to you.

[damaged]

[quote="sylviak"]Dear Damaged,

The article by Beltowski (abstract posted by Brooks) under the section Treatment answers most of your questions and should convince your doctor. It's about to be published so it is not yet available, but if you give me your email address, I'll send it to you.[/quote]

*veeber6464@gmail.com

thank you.
mike

[vicki]

Nothing has helped me get rid of the muscle and nerve pain. I tried just about everything. Prednisone, is great and has lots of side effects, it temperary fix. It made me fill better for a while. It also helped me breath better. The Stains cause me to have severe breathing problems to the point I had Kenelog shots and was on prednisone constantly. Can't live on Aleve, but it does help too, for awhile. I've been off Statins for over 8 yrs. now, still have the damage, I know it will never go away. I also got type 2 diabeties, cataracts, and CLL now. I know it was the Statin drugs. My doctor told me I needed to learn to tolerate the pain, the benefits are worth it. Left me on, or convinced me I needed to be on them... for 7 LONG YEARS. Yes I'm mad, I then had and have thousands of dollars worh of medical bills and maybe my life. I wonder how many others will or do have cancer now. I have to keep working for my medical insurance, I don't want to go on diability and rot away, I hurt all the time and can hardly stand the pain, what else can I do. Millions of people are being harmed by Statins and the FDA does nothing. PLEASE people complain and hopefully we will get these terrible pills off the market.