RE: Cheryl.

[Guest guest]

Hello Cheryl, I totally agree we cannot ever generalise on anything, and

this most certainly is only ( I say that in the nicest way) a support group.

networking and supporting others with conditions similar to our own.

We must use what is right at the time.

I also know that Iwould be dead long ago if I hadn,t had courses of

prednisone too.

But I also know enough now, and so do many good doctors, that prednisone

must be given with a lot more thought behind it now.

As it has been proven over and over to be causing probs with bones, and many

other thiings like heart disease.

It must be monitored at all times, and by doctors that are vigilant with

regard to its use and the patient.

I am one of those people( one of millions) that have been grossly affected

by overuse of prednisone, and am very sceptical, but I,m not so stupid that

if it was a life threatening situaion I found myself in again, and I was

instructed to use it, I would make sure the doc knew what he really was

doing, and would make sure, I would monitor myself, or my family would.

As they have all been with me to specialists who keep reminding them, that

if I,m on the stuff, and if I go away, or doc goes away, or carer, that I

must be observed all the time, as really the damage has been done, nothing

can do about the horrific damage, but can avoid any worsening, especially my

heart and kidneys, and to be vigilant in keeping track, remembering that you

must be weaned off large doses too.

I will never let a doctor give it to me, unless I am at deaths door with

asthma.

I will not ever let anyone say well the doctor ordered it either, without

knowing for sure , they have read completely all my records.

It does save lives, and for some it is just a short term dose, but for some

asthmatics, its long doses, that MUST be monitored, and kidneys, heart and

weight, must be kept in check.

I am only speaking for myself.

I only ask that everyone remember, we are all individual, we all must take

control of our health, and learn and be alerted to the dangers too.

Never hurts to ask, never hurts to be very in tune with your body, and

keeping it working without having to live with all the damage that can

result in permanant damage, that will affect your life forever.

Doctors know what pred does, and it wondeful effect, they also know now the

dangers.

A very well known specialist absolutely panicked when he saw my bones

crumbling, he had been giving me cortisone shots for frozen shoulder etc,

then he had a syringe full ready to go, then rushed out to check my history

, it just hadn,t dawned on him, that what he was about to do again, was what

had been part of the cause of my problems.

He had been my treating Physician for asthma for over 15 yrs, came back with

2 more clinicians, looked at us with shocked looks on their faces, and told

of what they had just discovered.

And what my future was to be.

They were dead honest.

I was sent away with an appt to have the probs rectified in theatre, by a

specialist radiologist.

I am just biding the time till I am wheel chair bound.

And all due to really negligence, not of my physician really, but by a

specialist who put me on high doses of pred and left and went overseas,

leaving me in the care of a JNR doc, that was the beginning, of what of

course was to follow.

Know one looked back at records each time I was admitted to hospital, no one

checked how many times how big the doses of pred I had been on over 30 or

more years.

It pays to know.

It pays to ask, and also remind doctors that you DO know what the dangers

are too, that way you can assure they will take care of you.

Nothing general in any of it. we are all individuals, but this group is here

to enjoy, and also learn from.

So people can take the info back to their own GP etc.

Sorry this post is so long.

I have a sister wheel chair bound for nearly 40 yrs because of negligence,

and I have the same fate ahead, that is why I am so terribly cautious, and

remind others to take caution too.

Sandy

[Guest guest]

Sandy, I'm so sorry for all your problems, but thanks for sharing the warnings with us. I'll be praying that you will never be wheelchair bound.

-------------- Original message from "sandy taylor" : -------------- > Hello Cheryl, I totally agree we cannot ever generalise on anything, and > this most certainly is only ( I say that in the nicest way) a support group. > networking and supporting others with conditions similar to our own. > We must use what is right at the time. > I also know that Iwould be dead long ago if I hadn,t had courses of > prednisone too. > But I also know enough now, and so do many good doctors, that prednisone > must be given with a lot more thought behind it now. > As it has been proven over and over to be causing probs with bones, and many > other thiings like heart disease. > It must be monitored at all times, and by doctors that are vigilant with > regard to its use and the patient. > I am one of those people( one of millions) that have been grossly affected > by overuse of prednisone, and am very sceptical, but I,m not so stupid that > if it was a life threatening situaion I found myself in again, and I was > instructed to use it, I would make sure the doc knew what he really was > doing, and would make sure, I would monitor myself, or my family would. > As they have all been with me to specialists who keep reminding them, that > if I,m on the stuff, and if I go away, or doc goes away, or carer, that I > must be observed all the time, as really the damage has been done, nothing > can do about the horrific damage, but can avoid any worsening, especially my > heart and kidneys, and to be vigilant in keeping track, remembering that you > must be weaned off large doses too. > I will never let a doctor give it to me, unless I am at deaths door with > asthma. > I will not ever let anyone say well the doctor ordered it either, without > knowing for sure , they have read completely all my records. > It does save lives, and for some it is just a short term dose, but for some > asthmatics, its long doses, that MUST be monitored, and kidneys, heart and > weight, must be kept in check. > I am only speaking for myself. > I only ask that everyone remember, we are all individual, we all must take > control of our health, and learn and be alerted to the dangers too. > Never hurts to ask, never hurts to be very in tune with your body, and > keeping it working without having to live with all the damage that can > result in permanant damage, that will affect your life forever. > Doctors know what pred does, and it wondeful effect, they also know now the > dangers. > A very well known specialist absolutely panicked when he saw my bones > crumbling, he had been giving me cortisone shots for frozen shoulder etc, > then he had a syringe full ready to go, then rushed out to check my history > , it just hadn,t dawned on him, that what he was about to do again, was what > had been part of the cause of my problems. > He had been my treating Physician for asthma for over 15 yrs, came back with > 2 more clinicians, looked at us with shocked looks on their faces, and told > of what they had just discovered. > And what my future was to be. > They were dead honest. > I was sent away with an appt to have the probs rectified in theatre, by a > specialist radiologist. > I am just biding the time till I am wheel chair bound. > And all due to really negligence, not of my physician really, but by a > specialist who put me on high doses of pred and left and went overseas, > leaving me in the care of a JNR doc, that was the beginning, of what of > course was to follow. > Know one looked back at records each time I was admitted to hospital, no one > checked how many times how big the doses of pred I had been on over 30 or > more years. > It pays to know. > It pays to ask, and also remind doctors that you DO know what the dangers > are too, that way you can assure they will take care of you. > Nothing general in any of it. we are all individuals, but this group is here > to enjoy, and also learn from. > So people can take the info back to their own GP etc. > Sorry this post is so long. > I have a sister wheel chair bound for nearly 40 yrs because of negligence, > and I have the same fate ahead, that is why I am so terribly cautious, and > remind others to take caution too. > Sandy > > > > >