Re: Mito Trigger?/Statins/Sunny

[Guest guest]

-Based on reading this article I have made an appointment to see my

GP tomorrow as I note the mention of frusomide which is used in

impaired renal function adding to the problems..I think that this

warrants an immediate re-think..Thank you again for bringing this

article to my attention

Gillian

-- In , z39z@a... wrote:

> 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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