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***A Start to a list of Drugs we should be careful of***

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Hi ..

Don't believe there is a formal list of drugs posted anywhere ... other than

those which people (Mito folks) have gathered together. The following is

taken from a file posted on my AdultMito list and could serve as a start.

If people would post drugs that they personally have found problematic ...

especially if they have been told by a Mito doc to avoid it ..... or they

have found warnings about use with metabolic diseases ..... we could add

to the list.

I doubt there is a Mito doctor yet who would be prepared to stick his neck

out and make a list BECAUSE our Mito conditions are so varied and our responses

are equally as varied!!!!! I can't say I can blame them.

The same holds true for our Mito cocktail .... although Drs Cohen and Gold

have a table of tiers of cocktail and their doseages according to body weight

in Kg! I feel they have stuck their necks out to help us since NONE of the

cocktail has been proven in any drug trial. You can find this list in a

table towards the end of their article "Mitochondrial Cytopathy in Adults:

What we KNow so Far". You can download this and print it out if you have

Adobe Acrobat Reader on your computer (available as a free download on the

same page) if you go to the <umdf.org/> site and then to "Library".

So ... here's a start!!!! Some of it was gleaned from the Anaesthesia article

on the library page of UMDF site. I take no responsibility for your use

of this list because I am NOT a doctor!!!!

MEDICATIONS CONTRAINDICATED

IN MITOCHONDRIAL DIESASE

On page 269 of the Syllabus for the International Conference on Mito Disease,

1997 you will find the following recommendations:

"Treatment remains largely symptomatic and does not significantly alter the

course of the disease. It includes avoidance of drugs and procedures known

to have a detrimental effect, symptomatic treatments, supplementation with

co-factors, prevention of oxygen radical damage to mitochondrial membranes

and dietary recommendations."

"It is advisable to avoid Sodium Valproate and barbiturates, which inhibit

the respiratory chain and have occasionally been shown to precipitate hepatic

failure in respiratory enzyme deficient children.

Tetracyclines and chloramphenical should be avoided as well, as they inhibit

protein synthesis."

As well certain types of anesthesia are also contraindicated. There is a

wonderful and comprehensive article dealing with the safety of anesthesia

in mitochondrial cytopathy patients in the October 98 issue

of the United Mitochondrial Disease Federation newsletter, as well as at

the UMDF site.

It is not always possible to avoid these drugs but at least if you are informed

ahead of time and the possibility of an alternative exists, you can make

an informed decision. There is no doubt that some folks with

mitochondrial cytopathy have used these drugs uneventfully, although the

potential is still there. Be an informed consumer!

Cohen and Shoffner lists about anaesthetic agents.

Barbiturates - Inhibits complex I activity at high levels

Benzodiazepines - Inhibits adenosine nucleotide translocase

Propofol and/or lipid carrier - Inhibits mitochondrial function

Halothane - Increased risk for heart rhythm disturbance

Nitrous Oxide - Neurotoxic, possibly by increasing nitric oxide production,

which inhibits cisacotinase and iron-containing electron transport enzymes:

affecting energy production

Non-depolarizing Agents - Increased sensitivity to the paralytic effects

and prolonged responses reported

Local Anaesthetic - Bupivacaine uncouples oxidation and phosphorylation

Should never use Lactated Ringer's solution (Ringer's Lactate) because it

contains lactic acid.

Depolarizing agents (Succinylcholine) bothers some people.

****************************

Valpro or Epilim (Sodium Valporate) is an anti-convulsant. It is known to

be a potential toxin to those with either mitochondrial disorders or metabolic

disease. It can cause severe hepatoxicity or liver failure in susceptible

persons.

Phenobarbital is another potential mitochondrial toxin that can also be dangerous

to those with mitochondrial cytopathy. It is wise to always ask your pharmacist

for the generic name of any drug being prescribed for someone with mitochondrial

cytopathy.

Hormonal Birth Control

Aminoglycosides are ototoxic for *some forms of Mitochondrial Cytopathies

- a specific genetic variation ( Mitochondrial 12S and 16S ribosomal RNA

- mutation of A to G in the 12S rRNA at position 1555)*

{Hutchins, Cortopassi 1994}. Aminoglycosides are *some* of the antibiotics

which end in "_______mycin". Ototoxic means that these drugs can cause hearing

loss or deafness. ASK YOUR PHARMACIST AND

PRESCRIBING DOCTOR.

Ergotamines due to the impact on hepatic function.

Neuroleptic drugs such as Haloperidol, Chlorpromazine, and Thiothixene.

Lipitor should not be used by someone with Mitochondrial disease as it depletes

CoQ10 from the cells.

Steroids can be used but should be used only when absolutely necessary and

this should be a very low dosage and not for an extended period of time.

Friendly alternatives (?)

Lamictal seems to be being used successfully. Topomax also appears to be

mitochondrial-friendly for intractable seizures.

-----------------

AND this one which contains much of the same information ....

Valproate

or Depakote (Valproic Acid) is an anti-convulsant. It is known

to be a potential toxin to those with either mitochondrial disorders or metabolic

disease. It can cause severe hepatoxicity or liver failure in susceptible

persons.

Phenobarbital is another potential mitochondrial toxin that can also

be dangerous to those with mitochondrial cytopathy. It is found in other

drugs such as Donnatol, Bellatol and can be prescribed under

other brand names. It is wise to always ask your pharmacist for the generic

name of any drug being prescribed for someone with mitochondrial cytopathy.

Hormonal Birth Control

Aminoglycosides are ototoxic for *some forms of Mitochondrial Cytopathies

- a specific genetic variation ( Mitochondrial 12S and 16S ribosomal RNA

- mutation of A to G in the 12S rRNA at position 1555)* {Hutchins, Cortopassi

1994}. Aminoglycosides are *some* of the antibiotics which end in

"_______mycin". Ototoxic means that these drugs can cause hearing

loss or deafness. ASK YOUR PHARMACIST AND PRESCRIBING DOCTOR.

Neuroleptic drugs such as Haloperidol, Chlorpromazine,

and Thiothixene.

There are a few other drugs that were mentioned in the syllabus from the

Mitochondrial Convention in Philadelphia. On page 269 of the Syllabus for

the International Conference on Mito Disease, 1997 you will find the following

recommendations:

"Treatment remains largely symptomatic and does not significantly alter the

course of the disease. It includes avoidance of drugs and procedures known

to have a detrimental effect, symptomatic treatments, supplementation with

co-factors, prevention of oxygen radical damage to mitochondrial membranes

and dietary recommendations."

"It is advisable to avoid Sodium Valproate and barbiturates which

inhibit the respiratory chain and have occasionally been shown to precipitate

hepatic failure in respiratory enzyme deficient children. Tetracyclines

and chloramphenical should be avoided as well, as they inhibit protein

synthesis."

As well certain types of anesthesia are also contraindicated. There is a

wonderful and comprehensive article dealing with the safety of anesthesia

in mitochondrial cytopathy patients in the October 98 issue of the United

Mitochondrial Disease Federation newsletter, as well as at the UMDF site.

It is not always possible to avoid these drugs but at least if you are informed

ahead of time and the possibility of an alternative exists, you can make

an informed decision. There is no doubt that some folks with mitochondrial

cytopathy have used these drugs uneventfully, although the potential is still

there. Be an informed consumer!

Friendly alternatives (?)

Lamictal seems to be being used successfully. Topomax also appears to be

mitochondrial-friendly for intractable seizures.

Cohen and Shoffner lists about anaesthetic agents.

Barbitrates - Inhibits complex I activity at high levels

Benzodiazepines - Inhibits adenosine nucleotide translocase

Propofol and/or lipid carrier - Inhibits mitochondrial function

Halothane - Increased risk for heart rhythm disturbance

Nitrous Oxide - Neurotoxic, possibly by increasing nitric oxide production,

which inhibits cisacotinase and iron-containing electron transport enzymes:

affecting energy production

Non-depolarizing Agents - Increased sensitivity to the paralytic effects

and prolonged responses reported

Local Anesthetics - Bupivacaine uncouples oxidation and phosphorylation

Should never use Lactated Ringer's solution (Ringer's Lactate) because

it contains lactic acid.

Depolarizing agents (Succinylcholine) bothers some people.

---------

Personally, I can add the Diabetes drug Metformin to this list. There

is a warning about the possibility "in rare cases" of lactic acidosis .....

and it has happened to me and to some other adults with Mito.

There are adults who claim that if there is the possibility of a side effect

"in rare cases" listed on a drug profile ..... chances are Mito is the rare

case!

Better to be extra cautious with all medications!

Jean Shepherd

AM L wrote:

Hi all,

I have been so busy lately and just had some minor surgery so I have been

just lurking. I keep noticing postings about drugs that are mito-toxic.

Is there a list posted somewhere?

If it is on the UMDF site, where is it located?

If there isn't a list of these, I would be really interested in putting

one together.

My brain doesn't remember most of the things it needs to lately so having

it all

on one list when we visit all the docs and one for the pharmacies would be

great.

Also, I keep seeing ppl say they are using different over-the-counter supplements

(natural and herbal) not just the CoQ and Carnitor, some have great results.

Would be interesting to put a list of those together, with definitions of

what

each one does, what brand seems to work best and the docs that seem to approve

or disapprove of them.

Thanks in advance

AnnMarie- complex IV

Married to my best friend Rick, mom of (14), (11), Cassandra(5)

and Joe(3 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome,

dysautonomia, and a smile that never quits :-)

Please contact mito-owner with any problems or questions.

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