Re: Peripheral neuropathy and statins

[Guest guest]

Hi Gretchen!

This information, like others I've seen, describes peripheral neuropathy and

muscle damage as a rare side effect of statins that can impact anyone and can

possibly be reversed once the medication has been stopped. I haven't seen

anything that's specific to CMT.

Do you know what the specific risk is for CMT patients? I have genetically high

cholesterol that has been controlled well for years with red yeast rice, but I

stopped the red yeast rice about a year ago when I learned it too was a statin.

My cholesterol is now very bad again and my doctor insists I do something. She

asked if I could find out the exact nature of the risk for CMT patients, so she

could figure out the best solution. She was thinking that perhaps Crestor might

be better, since it's processed differently than the other statins. I don't

recall her explanation exactly, but something about water soluble vs fat soluble

and also not involving the liver to get a result. But she was just guessing,

since she hasn't heard of a risk specific to CMT.

Are CMT patients at greater risk than the general population? If so, do you

know the exact mechanism that puts us at risk?

Thank you,

[Guest guest]

I thought the problem with the statins was just that if you are one of the

rare ones with this side effect and if you have CMT, you are in much greater

danger from the side effect, not more likely to experience it, but I don't

really know. It might be important to clarify this because the side effect is

so rare, if your cholesterol is really bad, you might want to take the risk.

Elinor

[Guest guest]

I took red rice yeast for years to reduce cholesterol. Until spring 2006 I had

never heard of CMT and thought my neuropathy was due to pinched nerves. With

onset of a charcot foot in 2006, I was also diagnosed with CMT-2. For the next

year I was focused on fixing my foot, and stopped taking medication for my

cholesterol.

In the meantime, my neuropathy has progressed and become quite painful,

especially after the foot surgery.

Last fall my doctor wanted me to start up with the red rice yeast again. I took

it twice daily. The nerve pain kept me up at night, or at least I was very

restless. Lots of spasms, and for lack of a better term, 'noise' from my feet. I

stopped taking the red rice at night and was able to sleep through the night

again, though the 'noise' during the day was sometimes distracting.

I stopped taking the red rice in December, and really noticed a difference in

reduced nerve/muscle pain.

The doctor wants me to take a pharma statin. I've been afraid to even get the

prescription filled.

I started taking 350mg CoEnzyme Q-10 in the fall, along with the red rice yeast.

I really felt that the CoQ-10 helped quiet the nerve 'noise' and have continued

to take it.

O

[Guest guest]

O:

I don't post often; but I wanted you to know that I have taken statins for

years for high cholesterol. Yes, at this point in time my legs are becoming

weaker; however, I have been diagnosed with CMT for 20 years, so I feel it is a

natural progression - darn it!

Anyway, we always have to weigh the pros and cons of taking medications. While

on the statins, I am able to control the

high cholesterol; however, I tried fish oil tablets and all the values went

haywire! Please talk to your primary physician as to what is the better choice

for us. Our big problem is not being able to exercise to help control the

cholesterol, at least I can't.

from New York State

[Guest guest]

Hi Elinor,

What you said is consistent with everything I could find on the subject. It

appears that this risks of statins hasn't been studied in CMT patients, so we

don't know if the risks are any greater for us than the general population. It

would be extremely helpful if a study specific to CMT patients could be

conducted. Although, I think it would be very challenging to determine what

muscle wasting is attributable to the medication verses the disease.

In my family, the high cholesterol is genetic with the CMT family members. Diet

and exercise doesn't help. I took a statin for many years, then switched to red

yeast rice, which is also a statin. Over 10 years combined on these statins.

Then I stopped about a year ago, due to information on the CMT medication list.

On statins, my cholesterol is about 200. Before statins and after stopping

statins, my cholesterol is about 350.

My doctors believe medication is the only thing that can control my cholesterol.

They also believe that taking the medication is less risky than the risks

associated with a cholesterol level this high.

In this situation, there does not appear to be enough information to help me

make an informed decision myself, so I will simply trust my doctors' opinion.

Hopefully, we will know more in the future.