Re: Re: Mito Trigger?/Statins

[Guest guest]

Interesting, gillian

http://www.medscape.com/viewarticle/444385?src=search

Talk here about statins has been much appreciated by me. It prompted

me a while ago to research it, and now to search again and finally

find again an aritcle that I used as a basis to make the decision NOT

to take statins, although they are highly regarded by the cardiologists

and I had read tons of positive stuff about them. But, my cholesterol

is only mildly problematic, and I am working on other ways to keep it

in line. Perhaps some of us do not have that option. Still, I would

suggest that you consider and research the topic carefully if you take

a statin and have mito. I think the article (url above) gives a

good, balanced (ie not put out by drug companies) view on statins.

Having spoken so strongly I want to also add - I am offering this only

as information, as a basis of discussion with our doctors.

There are 6 parts to the article, all worth looking at, listed in the

sidebar on the left. Don't think the first two pages are the only ones.

This paragraph is taken from the Conclusion, which you access by

clicking on it in the left column.

" Myalgias and cramps are the most common muscle-related side effects

reported with lipid-lowering drugs, although the overall frequency is

low (approximately 0.1%). The concomitant use of drugs such as

cyclosporine or erythromycin with nicotinic acid, fibrates, or statins

as well using a combination of lipid-lowering drugs increases the risk

of myotoxicity. Patients with uncontrolled hypothyroidism, muscle

coenzyme Q10 deficiency, muscle glycogenoses, or mitochondrial

cytopathies should not use these medications. "

Regards

Sunny

>

> Hi Donna,

> I was taking Simvastatin at the time and had been for ages when i

> had the biopsy...Simvastatin is what they give here in the UK grin> the cheapest statin...

> After stopping it I noticed roughly 3 weeks later I was not as

> floppy/wobbly and stopped getting dark brown uggh urine which

> happened frequently etc...things gradualy improved a lot for me...

> I have now been put on Avorstatin your US name Lipitor and am

> beginning to feel horrible again,I dare not stop it as I was told to

> take it by of all people my mito. doc due to serious cholestral

> trouble..

> I have done what patients shouldn't do and googled Lipitor and don't

> like what I read about it..I never had stomach cramps till about 3

> weeks after taking it...

>

> I undersatnd from reading as a LAYPERSON that they think that

> ALS/Parkinsons/Alzeimrs and many other neuro illness MAY have a

> mitochondrial malfunction component...

> Gillian

>

>

> > > > >

> > > > > >

> > > > > >  So, last week I received a clinical dx of mito from both

> > > neuro

> > > > and

> > > > > >  metabolics.  So I guess I'm in the right place.  Neuro

> said

> > > > that I

> > > > > >  don't have MS and my brain MRI shows no evidence of

> stroke so

> > > > the

> > > > > >  episodes could have been SLE's.  Bloodwork and exam show

> > > muscle

> > > > > >  disease. Carnitine deficiency plus other body systems and

> > > funky

> > > > labs

> > > > > >  plus family hx give enough weight to a clinical dx. Labs

> for

> > > > DNA and

> > > > > >  other funky things were drawn Monday so we'll see what

> comes

> > > > out of

> > > > > >  it.  I may go down to Atlanta for a muscle bx if we

> don't

> > > find

> > > > it in

> > > > > >  blood.  Not sure if it's dominant or maternally

> inherited

> > > > because ther

> > > > > >  are shockingly few boys in the family.  Several

> stillbirths

> > > and

> > > > > >  miscarriages that were boys though.  Go figure.

> > > > > >

> > > > > >  The theory about the sudden terrible muscle problems is

> > > this: 

> > > > I've

> > > > > > had

> > > > > >  this underlying myopathy all my life, since you can't

> change

> > > > your

> > > > > >  genes.  I've compensated well most of the time but the

> drug

> > > > reaction

> > > > > > to

> > > > > >  metformin (which happens in people with mito, go figure)

> > > > destroyed

> > > > > >  healthy muscle and left me with more abnormal, affected

> > > muscle

> > > > trying

> > > > > >  to do the job.  So now I need to find out how to

> condition

> > > this

> > > > lousy

> > > > > >  muscle and get on with life.  I have PT and OT evals

> next

> > > > week.  I'll

> > > > > >  have a hearing test, a neuro-ophthalmology exam, and a

> sleep

> > > > study. 

> > > > > > It

> > > > > >  will make for some busy weeks but we'll get more info. 

> I

> > > > really need

> > > > > >  to figure out if this will be a short-term thing or if I

> > > should

> > > > try to

> > > > > >  modify my work  (although right now I can't write so I

> can't

> > > > work at

> > > > > >  all).

> > > > > >

> > > > > >  The diabetes is under control with insulin 4 times a day

> and

> > > > blood

> > > > > >  sugar checks 4-7 times a day.  Still waiting for the

> blood

> > > work

> > > > to see

> > > > > >  if it's type 1 or2. 

> > > > > >

> > > > > >  Heidi

> > > > > >

> > > > > >  So now I have an appt with Dr. Sims at MGH.  I've heard

> > > > conflicting

> > > > > >  reviews but hopefully it won't be a waste of time.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

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