CMT and Statins
 

Has anyone diagnosed with CMT had rellief from their synptoms after stopping taking a statin, such as Simvastatin?

I have been on a statin for several years now, have needed a few stents implanted, and have receently been diagnosed with PN, most likely CMT.

I previously posted my symptoms

I would go off the statins only if there is a realistic possibility that they are the cause, or at least a possible contributing cause of my PN.

You have to have a genetic test to see if you have CMT.

There are drugs that will trigger CMT in people. Recently there was a paper about Levaquin triggering a patient who was genetically positive for CMT but hadn't expressed symptoms yet.

Since many people don't get the genetic testing done, for whatever reason, including its high cost, data is not available on this question.

However, we know today that statins cause neuropathy in some people. (along with alot of other serious side effects).

It is something to discuss with your doctor. You may have to go off them for 6mos to a year to see any change. There may be no change if the damage is already done. Alot depends on how long you took the statin and at what dose.

Kitt and Susanne C post regularly about their CMT. But we have had few others with a definitive diagnosis of it here, inspite of the large numbers of posters and visitors over the years. Many CMTers begin in childhood, and that may be one reason.

Statins
 

The use of statins can cause muscle weakness in anyone not just someone who has CMT. More muscle weakness is the last thing a CMTer needs. This would be something to discuss with your doctor. There are other things to try when one has high cholesterol including diet, etc. High cholesterol can also be inherited.

I know a few people in the general population (non CMTers) who have taken statins and have muscle weakness.

Personally, my cholesterol is fine. I would never take a statin if it was not. I would do other things such as diet, etc. That's just me.

Here is the Wiki on Charcot Marie Tooth:

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

If you Google this term and hit images along the left, you can see photos of people with this genetic problem.

Muscle atrophy can be pronounced with it, as the photos show.

They are not a cause of CMT, nor is going off them likely to eliminate all or most of your symptoms. I can tell you my experience, though.

About four years ago I was put on Tricor for high triglycerides, over 500, by my primary doctor. I was also in the process of being diagnosed with CMT. My balance had become so bad that I tripped even with a cane. I had severe pains in my legs, in addition to the loss of sensation and burning that accompanies small fiber neuropathy. My neurologist suggested in a round about way that I go off the Tricor, which I did.

My symptoms improved dramatically, especially my balance and the leg pain. I still had the loss of sensation, the burning feeling, and the tightness, as well as the muscle wastage. Four years later the pain in my legs is worse than it was then with the Tricor, but that is the disease process. My balance has never gotten as bad as it was then.

You may experience some improvement in symptoms if you discontinue the statins, but I do not believe it will affect the underlying disease process, which is always progressive.

I was able to achieve much the same decrease in my triglycerides by taking fish oil, walking every day, and losing some weight. Only you and your doctor can decide how necessary the meds are in your case.

From one of your other posts you said you had foot drop that was caused by a compressed nerve next in your leg next to your knee and it was taken care of via surgery.

http://neurotalk.psychcentral.com/sh...861#post923861

If you indeed have CMT, that would not be the case. AFO's help CMTers who have foot drop. You should see a neurologist who can help you as far as genetic testing which would tell you if you do indeed have a form of CMT that they now can test for. The testing is very expensive if they have to do the full panel of tests.

Also, here is a medications list for people who do have CMT.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

As you can tell there is an uncertain or minor risk for a CMTer. There can be muscle weakness from a statin as the general population also can experience. I know of a few of those people.

With all due respect to that list at the CMT site...

I think it is out of date... Just like the B12 info is still out of date and can be found out of date on many sites.

It takes a LONG time to move medical minds. Once made up it takes ANOTHER long time to move them from that first concept.

Regular non CMT people get PN from statins.
Here is the link again of a collection of statin research papers, most of which I think most doctors have never read:

Here is the list again:
http://www.greenmedinfo.com/toxic-in...drugs?ed=35335

Also today, more biochemistry is being done on cholesterol, especially cholesterol sulfate, Dr. Seneff being the main researcher:
http://people.csail.mit.edu/seneff/

This work is really compelling. There are also YouTubes with her.

Providing sulfate, therefore is helpful...and our epsom salts and magnesium lotions are prime sulfate sources.

This is just one link from her page:
http://people.csail.mit.edu/seneff/s...ink_twice.html

Are you posting about the medical list on the CMTA site? I doubt that what is on there is out of date as it's from a very informed site - the CMTA. The list is continually moderated and compiled by neurologists, etc. #6

http://www.cmtausa.org/index.php?opt...15&Itemid=50#5

So I am confused if that is what you are posting about. They do not mention PN on that site only the medicines to watch out for. That's what I meant by that site. I was posting about "muscle weakness", not PN, from statins and the fact that I know people in the general public who have muscle weakness from statins.

As far as B12 on that site they could be not up to date on that as many other sites are not up on it. But again, I was posting about "muscle weakness" and statins for CMTer's and for some of the general public as well. I see nitrous oxide and a B12 deficiency. I never brought up B12. Did someone else?

Statins do not appear to be good for anybody regardless if there is a possibility of muscle weakness or PN.

Thanks for your help in explaining this as I'm probably not reading your post right. I know I mis-stepped when I posted that there would be only muscle weakness and not PN concerning statins. Sorry for that.

In your wiki site it shows a foot with CMT. However, not everyone with CMT has high arches. A CMTer can have high arches, flat feet, normal feet or one high arch and one flat. It depends on what muscles are affected. Symptoms of CMT can become evident when you are young, old or in-between or symptoms may never be that evident. The same with the way a CMTers legs look for example. They can be normal looking even though they are weak. Symptoms depend on so very many things and also the type and subtype of CMT a person has. And symptoms of CMT vary greatly even within the same family. I know this for a fact. CMT can also be misdiagnosed even today.

I am no expert but I do live with CMT everyday and I have known and seen it since I was 5 years old (not in myself as I did not have symptoms for years and years). Other people can only read about it and lots of that information is not up to date or accurate either.

There is a question in the questions section, that says statins are okay for CMTers. Statins are not okay for others, so I would think the same would go for CMTers. But of course they are not going against "standard of care" which still includes statins. (much to the detriment of many many people today.). The "standard of care" that doctors decide upon, obviates any new information or warnings. It takes a mountain to move them once they decide on something, even in the face of evidence.
The Vit D information that was recently released by that national committee is a good example... still recommending 800IU for adults when evidence is strong for higher. It will be another decade before they come around on that one, and they will eventually.

If you go to the questions area it is around #10 or so in the list.

Statins are in the mild to moderate section of the 3 lists on the site at another file. I just get so frustrated as all the new information keeps showing up about the risks and less about the benefits. If you read Dr. Seneff she explains that statins work well only in the very early phases of treatment, and then the toxicity begins. She explains why this is.

Kitt, I am not sure I understand what you mean when you wrote "If indeed you have CMT, that would not be the case."

Could you please explain. i assume you are referring to my post regarding my drop foot.

Just to further elaborate, the neuropathy was developing slowly prior to the drop foot, although I did not realize it at the time. After the drop foot was resolved, the neuropathy then progressed over the course of the next 9 to ten months, which brought me to the neurologist who then evaluated my condition and diagnosed my PN. Since she eliminated the other common causes of PN she concluded in her report that she suspected genetic PN.

I think I know what Kitt will say..... so I'll let her handle that question.

Here is a list of the tests to determine if someone has PN....
It is by Dr. Latov from New York, who is an expert on them.
So check out your tests and see if any have been missed:

http://www.questdiagnostics.com/test...ripheralNeurop

If you get diagnosed too soon with a hereditary PN, without confirmation by DNA testing...you may close doors to healing or reversal or stopping progression that exist.

You still have not shared with us, what other drugs you take, and your test results. It is your choice whether you choose to do so. But please understand that doctors often do not understand neuropathies well. This forum is filled with stories of doctors who dismissed the poster with a premature diagnosis of idiopathic when more could have been done. Some things are up to you, as well... you need to become proactive in your own PN experience. You can choose not to, of course.

All I am saying is that as far as I know you cannot eliminate foot drop with surgery for someone who has CMT. That is as far as I know.

There are many, many kinds/types of PN and some are genetic as well. I hope you find an answer.

My understanding--
 

--is that yes, foot drop will not be eliminated by surgery in those whose cause for it is something systemic, such as CMT, another hereditary neuropathic process, or even a condition such as diabetes (and there are some people some people with diabetes whose de-enervation has progressed to the point that their motor functions are affected and they show foot drop; this is not uncommon in conditions such as CIDP, either).

But, if the foot drop is caused by nerve compression at the lumbosacral nerve roots, or if the compression is farther down the tracts of some of the long nerves of the leg, proper surgical technique might relieve the foot drop, if it is not of too long standing (e.g., the compressed nerves have not been damaged severely over a long period of time).

The Wikipedia explanation of this is actually pretty comprehensive:

http://en.wikipedia.org/wiki/Foot_drop

I have had symptoms since childhood/adolescence, which went unnoticed because I was largely neglected as a child and had no contact with my biological father's family, from whom I inherited the CMT. I have a half sister who has worn braces since childhood for it. I could not run, roller or ice skate, dance, or even play kickball or simple ball games because of my lack of coordination. I was made fun of at school and called lazy by my mother. When I was diagnosed, and my childhood was a big factor in that, it explained so mny things. I actually felt better about myself. I wasn't too lazy to do all those things, I couldn't do them.

Yes, that was my case. Compressed nerve, which was resolved with surgery.

OK, here are the meds I take:Ramipril-5mg. twice a day; Tamsulosin-0.4mg. once a day;Simvastatin-20mg. once a day( I have discontinued this) and now take Red Rice Yeast instead);Omeprazole-20mg. once a day; Alprazolam-1mg. at night to help with sleep; Plavix-75mg. once a day; Gabapentin-300mg. at night for foot pain.

I also taker the following ; Resveratrol-500mg once a day; Iron-65 mg. once a day; Glucosamine-Chondroitin-1,500 mg once a day, and a multi-vitamin/mineral tablet once a day.

During my initial visit to my intern this may, he did the following blood tests: HGB AIC-result 5.0;TSH-Result 1.1671;Anti-Nuclear Antibody(ANA)-Result <1:40NEG;Ultra Sensitive CRP-Result0.29;ESR-Result 8;Vitamin B12-Result 821.

During my visit to the Neurologist in last August, she did additional blood work. She told me it was all negative. I am in the process of getting a copy of the results.

I am also now taking two capsules twice a day of the Neuropathy Support Formula, which I plan on trying for 3 or 4 months,and Ubiquinol QH Absorb, reduced form Co-Q10, 100mg. capsule twice a day.

If you need anything further, please let me know.

I will very much appreciate your further comments on my condition.

Thank you.

Okay, thank you...that is helpful.

Red Yeast Rice contains statin type molecules. Depending on the brand it is spotty in effect. But all of them have lovastatin in some concentration, as the rice is a source of it naturally.
http://en.wikipedia.org/wiki/Lovastatin

I am unsure if you are receiving therefore enough to make a difference.

Now, can you tell me why you are taking the iron? Did the doctor tell you to? The reason I ask is that iron is not recommended unless your blood work says so. Anemia or low hematocrit. Men's vitamins do not typically contain iron, because it can accumulate and cause damage to the heart.

Chronic use of Prilosec... has been shown to affect these nutrients:
B12
folic acid
calcium
magnesium
zinc
iron absorption

Your B12 is still good, but I'd keep an eye on it, because eventually you will use up your stored B12 from the liver (up to 5yrs worth) and then become low. B12 is broken out of protein food, by acid and by removing that, the B12 cannot be absorbed any more. Proton pump inhibitors also now have the warning about osteoporosis risk because they block calcium absorption too.

Ace inhibitors for blood pressure taken for long periods also impact zinc, and so does the Prilosec.

Low magnesium can lead to many issues with nerves. So I'd consider using a good magnesium supplement like SlowMag (available at WalMart) twice a day.
Look at your multivitamin and check if it has zinc. That may be all you need at this point. If you have bleeding gums or sores that don't heal fast, or losing more hair than normal consider a zinc supplement. OptiZinc is the nicest with few GI side effects.

Taking that neuropathy formula... you should do this on an empty stomach, so the B12 and ALA will be absorbed properly.
If you don't do this, you may lose that value for those nutrients.

I am going to digress a minute... about the rampiril:
This ACE inhibitor is the only one in that family that can cause
liver damage. So I hope you are getting liver tests regularly with your check ups.
http://en.wikipedia.org/wiki/Ramipril
and
http://www.ncbi.nlm.nih.gov/pubmed/14567716

As a suggestion lisinopril, is much easier to tolerate in the body, and is not metabolized by the liver at all. So consider this as a possible intervention for you at another time. I, myself, switched to lisinopril years ago after learning about how much better it can be than some of the other drugs in that family.

Now, chronic use of Xanax or other benzodiazepines can lead to more symptoms of PN... this is because tolerance occurs quickly and the drug wears off (and Xanax is fast acting anyway) and when it does, the tingling etc starts as part of what is called a mini withdrawal. It may help you fall asleep quickly but by morning you will start to have the withdrawal, and hence peripheral symptoms. If you can discuss changing your sleep medication to melatonin, or Ambien or any non-benzo drug, you may see some improvement there. Xanax must be tapered off carefully if you have used it for a long time. If you choose to do this, with your doctor's approval, you may see increased PN symptoms for a while. (that is the withdrawal symptom).
Benzos have effects on nerves...they are used sometimes as an anticonvulsant is used in seizure patients. Often they are given for that reason. Withdrawal therefore is going to show excitation of nerves to some degree. So consider this.

Withdrawal and "mini" withdrawal is explained here:
http://www.bcnc.org.uk/howtowithdraw.htm
While your use is not heavy, or problematic in the habituation sense, your body is still in a mini-withdrawal just a few hours after you take that Xanax. Your nerves are telling you so, I believe. The gabapentin is possibly masking some of this, and it too is an anticonvulsant. (dampens nerves).

Benzos are good for the short term, but long term one can get into a negative cycle, with them wearing off, and causing side effects. Xanax is the fasting acting one so the most noticeable, in this regard. So you may have to think about this and discuss a change in bedtime sleep induction that will not be a benzodiazepine.

That is all I can see for now. It is more than I thought would be a potential problem for you.

Here is a site that explains drug nutrient depletions. People taking chronic meds, can benefit from understanding how RX drugs impact our chemistry in ways not well attended to by doctors:
http://www.chiro.org/nutrition/ABSTR...orticosteroids

I have two reference books on this subject that I consult, which are more complete than the online lists.
The Side Effects Bible by Dr. Vagnini MD
And
Drug Induced Nutrient Depletion Handbook by
Ross Pelton RPH, PhD, CCN and James LaValle, RPH, DHM, NMD, CCN
Ernest Hawkins RPH, MS
Daniel Drinsky, RPH, MS
2nd Ed. (out of print at this time).

I also forgot to add:

As you take the CoQ-10 supplement, you may find that your current dose of blood pressure medication is too strong.

Ideally taking your own pressures at home will reveal this.
But if you don't have a cuff, then report and dizziness on standing or feelings of faintness etc to your doctor.

When CoQ-10 is low blood pressure can go up. As this is fixed,
the pressure may improve and you may need a dosage adjustment of your medication.

Too bad the 2nd book is out of print. I will have to get the other book.

Mrs D, thank you for your very helpful response. If I may, I have a few questions for clarification regarding your observations.

First, as to the Red Yeast Rice. Are you suggesting that I increase the dosage, or that I stay on the statin, or what?

I am taking the iron because I have a long history of anemia, but it is pretty much optional as far as my doctor is concerned. I am monitored twice a year with blood work so I don't really have a worry about it or the ace inhibitor.

I will take your advice and start taking the magnesium supplement you recommended.

Your observations about Xanax is interesting. No one, including my doctors, have mentioned that. If it has the potential of increasing my PN symptoms then I will discuss with my doctor getting off it.

My multivitamin has zinc, but I have noticed hair loss on my legs, and sores not healing as quickly as they should, so I will also start the zinc supplement, as well.

I do know about taking the Neuropathy Support Fomrula on an empty stomach.

Lastly, as to your caution about watching my blood pressure, I do have a cuff, and although I do monitor my pressure periodically, I will start to do so more frequently.

Thanks again. And, any additional advice you may have to help manage or resolve my PN will, of course, be most welcome.

Well, as far as the Red Yeast rice goes, it has the potential to cause the same effects as any statin, since it has statins in it.

So taking it is confusing. If it is weak enough it won't matter either for your PN or cholesterol. If it is a strong brand, you will still be taking a "statin" so you gain nothing in your trial to see if stopping statins will help you. In other words it is "confounding".

Many doctors only know superficial things about drugs. Things from the inserts which are limited, and very little post marketing information. They learn from drug reps mostly, and Xanax is no longer detailed.

I am sending you a link to explain more in detail about how the benzos can cause symptoms similar to PN.

Hair loss on the legs often comes with aging, and can also be connected to PN. Also from low thyroid. I've lost all the hair on my arms and thighs, but still have a little on my legs. I attribute this to my low thyroid for so many years.

The benzo problems have to due with causing hyperactive nerve responses over time (as the drugs wear off). It is subtle and only doctors familiar with addiction and withdrawal may understand it.

The effects of the CoQ-10 will not be immediate, but possibly by the first month of use is over.

Ron, if you decide to stop using your Xanax at bedtime, you ideally should taper off. I would do so slowly... because your body is used to this dose, esp if you have been on it a long time.

Discuss this with your doctor. But realize that some doctors may refuse a taper, or do one too fast.

Please post here after you discuss this with your doctor.
And also consult that Benzo site I gave you in the PM I sent.

I read on another site that someone who stated that he had CMT claims to have "cured" it with large does of vitamins E, C and CO-Q1O,

What do you folks think?

Not true. They have and are having trials all over the world on Ascorbic Acid (Vitamin C. Nothing has worked as far as that goes. We all would be cured if that were true. There is no treatment/cure at the present time for any type of CMT.

You can have side effects from too much Vitamin C. Those trials are very controlled and some people could not tolerate it at all.

Well, we don't know the details of what people often post on the net.

There are many variants of CMT. In the recent past it looked promising that high dose Vit C could help, but then when the trials happened, it was disappointing.

http://lpi.oregonstate.edu/ss06/charcotmarietooth.html
and
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3154498/

Rodent studies don't always translate to humans. I recently saw a figure of about 60% only may apply to humans after rodent study successes.

There is no harm in trying them, however that I know of. You will want
to make sure your kidneys are working normally, however.

If you do the E, get natural and one with all the forms combined, including gamma. Natural ones typically end in --OL (tocoferOL)
and not --YL

I do not know what curing it would involve. Did he claim to regrow wasted muscle tissue? This disease is highly idiosyncratic and is different for everyone, even in the same family. It can go into remission where nothing changes for a while, and then hit you with a sudden increase in pain and decrease in strength. I feel that everyone who makes outlandish claims of being "cured", or talks a lot about having CMT without any life-affecting symptoms reduces the credibility of those of us who are suffering pain and disability from the disease.

Yes, I agree. We never use the word "cure" here.

Depending on what is causing PN... the closest thing to a "cure" is for those who don't really have a true PN, but have paresthesias instead.
Paresthesias are symptoms of something else, and in certain cases when the primary problem is fixed, then the paresthesias go away.(the symptoms stop). It is a fine distinction, but it can happen. Hyperventilating or having acidosis from something can cause tingling in the periphery but it goes away when the situation changes and the hyperventilation is corrected. That is one example.

PN symptoms that come and go may be paresthesias. PN symptoms that remain constant probably are not.

Some doctors just tell patients things that are inaccurate. A doctor may just believe a person has CMT, and tell them that without further testing or family history investigation. If that were the case, one would have to realize it was not a real diagnosis.

In the opposite vein, I am becoming concerned about the news coming to light about the tainted methylprednisolone injections given as epidurals and joint injections, and their perhaps being a trigger for
nerve pain. The latest news suggests this was going on way before it was discovered... so people may be suffering from fungal infections in joints, or the spine for all we know, those who had epidurals, etc.
http://neurotalk.psychcentral.com/post924931-20.html

or its possible the person was misdiagnosed with cmt and never had it in the first place.

OK, thanks for the responses. Just thought that I would ask. I am new to this, and am, quite naturally, looking for anything that will help my condition.

I didn't mean to sound unsupportive, but I see that I did. I have a tendency to be blunt. If you have a pretty firm diagnosis of CMT, you should follow all the protocols for any chronic illness, eat well, exercise as you are able, get enough rest, treat yourself well. There are many books out there on the subject of chronic illness and pain, and a lot of support on this forum and others. Our point is that CMT is not treatable or curable, and the only care is palliative, i.e. pain relief and mechanical helps such as canes, AFO's, etc. It is also progressive, and coming to terms with that is important. Not all outcomes are dire. Many people with CMT reach old age with symptoms similar to osteoarthritis, but others end up in wheelchairs at middle age, and some are crippled in childhood.

If there is still a possibility that something else is causing your symptoms, pursue that because it means treatment is a real option.

No problem Susanne. I understand. Actually I don't have a definitive diagnosis of CMT. My neurologist could not determine the cause of my neuropathy from the blood work and EMG, so concluded that is is either CMT, or idiopathic.

The genetic testing necessary for a diagnosis is, as you know, very expensive, not covered by my insurance, so the neurologist recommended against doing it.

So, at this point, it could be CMT or idiopathic, and I am, frankly, just blindly searching for answers.

That is very frustrating, but I understand. Your neurologists are right about the testing, it is expensive and there are not tests for all variants, so can be inconclusive. I refused the testing as well, with the blessings of my doctors. Idiopathic PN is a frustrating diagnosis, it tells you nothing. CMT is progressive and incurable, but gives you something definite to refer to.
Were there things in your family history or childhood/adolescence that supported a diagnosis of CMT?

No, nothing. Actually, in her report she stated that she suspects CMT, I suppose because she could not find an actual cause from the workup she did, but she did not make a definitive diagnosis.

Although I understand your preference for certainty, until I am convinced that my neuropathy is CMT, I plan to continue to search for treatments which could possibly bring me long term relief.

This may be unduly optimistic, but I am not quite ready to accept a CMT diagnosis.

Not at all, in the absence of any other factors I think you are doing the prudent thing. My markers overwhelmingly pointed to CMT, and in fact my eldest son has it as well.
Good luck. You will benefit most fom the nutrition and supplement info here. Read everything.