Re: Thank you all BP medications in Mito.

June 7, 2005

Thanks all,

have spent a while getting the US names translated to UK

names via google..Accupril is our Quinapril an ACE1..Vasotec is

Enapril an ACE1 which I developed an allergic reaction to after

being on it for a couple of years no -one could explian

why.....Norvase is Amlopidine which sent me into heart failure mito

related possibly electrolyte trouble..this is most interesting as I

see that no-one is taking ARB's ..it was ARBs Candesarten, Losarten

and Irbesarten which the nephrologists said were safe but all caused

me to be hospitalised...

Tenormin is our Atenolol which the GP is avoiding as it depletes Q10

according to the info. he has found !!!Maybe that could explian the

fatigue I don't know I'm only a patient..

My Gp tried to explian to me and my husband that as the mito is

cellular it will affect the way I use meds..seemed logical..then he

said that when drug trials are done anyone with any other condition

even basic things are excluded so it is trial and error even with

non-mito patients..and he knows that I have renal problems so he is

trying to find something that will work without sending my kidneys

wrong again get lost in his modes of actions of drugs, blah,

blah..

Sunny I understand what you mean about maybe small doses of drugs..I

was having real problems with the Irbesarten, GP wrote to Consultant

and Consultant ignored GP concerns and increased the dose..result 16

days in hospital on potassium drips..GP furious..me 'good patient'

doing as Consultant ordered and Consultant still saying the med

could not have done that...but I have MITO so it can this is

why GP is now going to take charge himslf of BP..He has taken note

of my comments on how awful I feel on diuretics and withdrawn

them..Our system is that Thiazides are always the first med given

for BP followed by Enapril, There are'NHS prescribing protocols'

they follow cynics say money-saving so he wil be stepping outside

the box with this..Its only consultants that can order some BP meds

in theory..

So thanks again all will phone later and tell him which ones you

seem to be succeeding with and let him take over

Gillian

>

> > My GP has suggested I ask you all as PATIENTS with MITO. if any

of you

> > take BP meds for high blood pressure and if so what have you

found to

> > work without causing problems re. your mito.

> > Yes I seem to react badly to some of them..lose

> > potassium for some unknown reason,

> > I have tried diuretics and they were horrendous..

> > This is not medical advice he/I are seeking just patients

opinions as

> > it may help him to give me something that may be commonly used

on this

> > list that WORKS without major problems..

> >

> > Thanks

> > Gillian

> >

> > Medical advice, information, opinions, data and statements

contained

> > herein are not necessarily those of the list moderators. The

author of

> > this e mail is entirely responsible for its content. List

members are

> > reminded of their responsibility to evaluate the content of the

> > postings and consult with their physicians regarding changes in

their

> > own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends

> > one is automatically moderated or removed depending on the

severity of

> > the attack.

> >

June 7, 2005

Gillian

I'm sorry about your having to look the meds up. I could have given

you the generic names. The docs wanted me off the altenerol, but I had

some heart problems (chest heaviness) so I went back on it at a low

dose - 25 mg twice a day. My neuro and nephologist both say that the

quinapril is the best thing - it protects the kidneys and only has to

be taken once a day, although they are open to splitting the dose if I

get better control with that. I have been on the same dose of the meds

for several years.

lauriel

> Thanks all,

> have spent a while getting the US names translated to UK

> names via google..Accupril is our Quinapril an ACE1..Vasotec is

> Enapril an ACE1 which I developed an allergic reaction to after

> being on it for a couple of years no -one could explian

> why.....Norvase is Amlopidine which sent me into heart failure mito

> related possibly electrolyte trouble..this is most interesting as I

> see that no-one is taking ARB's ..it was ARBs Candesarten, Losarten

> and Irbesarten which the nephrologists said were safe but all caused

> me to be hospitalised...

> Tenormin is our Atenolol which the GP is avoiding as it depletes Q10

> according to the info. he has found !!!Maybe that could explian the

> fatigue I don't know I'm only a patient..

> My Gp tried to explian to me and my husband that as the mito is

> cellular it will affect the way I use meds..seemed logical..then he

> said that when drug trials are done anyone with any other condition

> even basic things are excluded so it is trial and error even with

> non-mito patients..and he knows that I have renal problems so he is

> trying to find something that will work without sending my kidneys

> wrong again get lost in his modes of actions of drugs, blah,

> blah..

> Sunny I understand what you mean about maybe small doses of drugs..I

> was having real problems with the Irbesarten, GP wrote to Consultant

> and Consultant ignored GP concerns and increased the dose..result 16

> days in hospital on potassium drips..GP furious..me 'good patient'

> doing as Consultant ordered and Consultant still saying the med

> could not have done that...but I have MITO so it can this is

> why GP is now going to take charge himslf of BP..He has taken note

> of my comments on how awful I feel on diuretics and withdrawn

> them..Our system is that Thiazides are always the first med given

> for BP followed by Enapril, There are'NHS prescribing protocols'

> they follow cynics say money-saving so he wil be stepping outside

> the box with this..Its only consultants that can order some BP meds

> in theory..

> So thanks again all will phone later and tell him which ones you

> seem to be succeeding with and let him take over

>

> Gillian

>

> >

> > > My GP has suggested I ask you all as PATIENTS with MITO. if any

> of you

> > > take BP meds for high blood pressure and if so what have you

> found to

> > > work without causing problems re. your mito.

> > > Yes I seem to react badly to some of them..lose

> > > potassium for some unknown reason,

> > > I have tried diuretics and they were horrendous..

> > > This is not medical advice he/I are seeking just patients

> opinions as

> > > it may help him to give me something that may be commonly used

> on this

> > > list that WORKS without major problems..

> > >

> > > Thanks

> > > Gillian

> > >

> > > Medical advice, information, opinions, data and statements

> contained

> > > herein are not necessarily those of the list moderators. The

> author of

> > > this e mail is entirely responsible for its content. List

> members are

> > > reminded of their responsibility to evaluate the content of the

> > > postings and consult with their physicians regarding changes in

> their

> > > own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> sends

> > > one is automatically moderated or removed depending on the

> severity of

> > > the attack.

> > >

June 7, 2005

Good Luck, Gillian. it is scary to think that meds MAY do more harm

than good, but that is the reality we must deal with. I am glad your

GP is taking this question seriously, and I hope he finds a combination

that will work for you. You are especially lucky to find a GP who will

disagree with " the consultant " .

I didn't know any of them depleted Q10. I will check Atenolol

carefully.

Regards,

Sunny