Re: Scared and Confused - Question

[Guest guest]

Hi Esther,

I understand your apprehension about the steroids, which is what the

Prednisone is. However, when they do their job and are used for a short term

temporary treatment, there is really no substitute.

Definitely do not start any natural substances without checking with your

doctor because there are a number of herbal or natural medications that can be

harmful for those with kidney disease.

Prednisone can be a great drug and has brought the IgAN under control for

many of our members.

In a message dated 12/15/2004 12:57:16 PM Pacific Standard Time,

pick39@... writes:

> Hi Everyone:

> What would happen if we do not give the prescribed medicine to our children?

> I mean the Prednisone sounds like cortisone or steroids? I would prefer a

> more natural way of helping my son. I know I am jumping the gun here but I

> was wondering about this. Drugs scare me.

> Thank you,

> Esther

[Guest guest]

Hi Everyone:

What would happen if we do not give the prescribed medicine to our children? I

mean the Prednisone sounds like cortisone or steroids? I would prefer a more

natural way of helping my son. I know I am jumping the gun here but I was

wondering about this. Drugs scare me.

Thank you,

Esther

W4JC@... wrote:

The Prednisone treatment is really based on patient response. They will

monitor her labs to watch her protein spill, and when it is sufficiently down

and

she appears stable, they will slowly wean her off. A word of caution, being

slowly weaned of is very important. Prednisone is one drug that it is very

dangerous to just stop cold turkey.

The flare-ups that occur with IgAN are in conjunction with a viral illness,

and normally the labs will worsen during a flare up, and return to the baseline

after recovery. But, unfortunately that does not mean the IgAN goes away.

It never does go away. Many people have a fairly benign IgAN that never

progresses to end stage, but the underlying disease does not go away.

Occasionally,

usually only in children, IgAN can go into remission though, but that is very

rare.

Hope this helps,

In a message dated 12/15/2004 5:42:33 AM Pacific Standard Time,

littlell523@... writes:

> I was wondering about all that, the doctors never did tell me how

> long they thought she was going to be on it. So, I don't

> understand, they put you on the prednisone to get the swelling down

> and stop the protien drops and then take you off it? I have also

> been reading about flare ups. If I'm understanding right, IGAN

> isn't something that is always there? The protien and blood will

> stop, and then what??? I understand that the damage that has been

> done can't be repaired, but I guess I don't get how this works?.?

[Guest guest]

Dear Esther,

I understand how you feel about Rx drugs. There is no doubt that prednisone is

very powerful medicine, but the benefits of being on it usually outweigh the

risks- and it usually helps the kidneys to work better and not to leak. It

usually works fast, too- that is another reason why they do it, to get the

proteinuria down quickly.

Unfortunately many " natural remedies " can seriously hurt the kidneys- and I

don't know of a single one that would reduce proteinuria and help the kidneys

work better. If there were something more benign to use, doctors would do it.

None of them like to put patients on prednisone for a long time, because of the

side effects,ect... But the alternative- letting the kidney disease progress

unchecked - is much worse. Prednisone is another name for glucorticosteroids-

nothing at all to do with anabolic steroids, and not the same as cortisone

although somewhat related.

Don't be afraid to question your son's doctor and get explanations for what

he/she plans on doing. This is a great way to be a good advocate for your son,

and to understand more about what's going on for your peace of mind and for his.

Best wishes,

-beth

[Guest guest]

In the situations where prednisone (an oral steroid) is clearly called for,

there is really no alternative. It's either that, or deal with the severe

symptoms of nephrotic syndrome, or possible acute kidney failure, or chronic

kidney failure in the near future.

There can be some more marginal situations (mainly, milder proteinuria)

where it's not as clearcut whether prednisone would be beneficial or not.

But with pediatric IgAN, most of the time, prednisone does the job.

But no, there are really NO alternatives to oral steroids when they are

needed. If anyone is looking for a miracle treatment in the world of kidney

disease, prednisone is pretty close to being one.

Pierre

[Guest guest]

Hi Esther,

First off, I'd take the time to educate yourself about the drugs. I don't

mean memorizing every last side effect, but understanding how they work in

the body. Once you have learned what is happening biologically and how the

drug works to help, the experience of taking the drug is far less scary.

One of the scarier things about renal disease in general is the seemingly

endless array of drug names that you're confronted with - just in the

process of reading these posts. Fortunately, they all can be reduced down

to a few different categories of immunosuppressants and BP meds - and it

would be well worth your time learning how they work. If the only

information you have is these posts, it would seem that no one in their

right mind would take prednisone, cyclosporine or even lisinopril - yet for

some of us these are literally life savers.

While your impulse to do things " the natural way " is a good one, this isn't

exactly like childbirth where you have such options. There are a handful of

things you can do such as lowering sodium, staying hydrated, ect - but these

are all common sense anyway. I would review the web site www.igan.ca . If

you are are really intereseted in " natural " stuff, there is a link to

Donadio's paper on fish oil which you might be interested in reading. I

think this is useful to augment more conventional treatments, but I

certainly don't think it replaces them.

Cy

Re: Scared and Confused - Question

>

> Hi Everyone:

> What would happen if we do not give the prescribed medicine to our

children? I mean the Prednisone sounds like cortisone or steroids? I would

prefer a more natural way of helping my son. I know I am jumping the gun

here but I was wondering about this. Drugs scare me.

> Thank you,

> Esther

>

> W4JC@... wrote:

> The Prednisone treatment is really based on patient response. They will

> monitor her labs to watch her protein spill, and when it is sufficiently

down and

> she appears stable, they will slowly wean her off. A word of caution,

being

> slowly weaned of is very important. Prednisone is one drug that it is

very

> dangerous to just stop cold turkey.

>

> The flare-ups that occur with IgAN are in conjunction with a viral

illness,

> and normally the labs will worsen during a flare up, and return to the

baseline

> after recovery. But, unfortunately that does not mean the IgAN goes away.

> It never does go away. Many people have a fairly benign IgAN that never

> progresses to end stage, but the underlying disease does not go away.

Occasionally,

> usually only in children, IgAN can go into remission though, but that is

very

> rare.

>

> Hope this helps,

>

>

> In a message dated 12/15/2004 5:42:33 AM Pacific Standard Time,

> littlell523@... writes:

>

> > I was wondering about all that, the doctors never did tell me how

> > long they thought she was going to be on it. So, I don't

> > understand, they put you on the prednisone to get the swelling down

> > and stop the protien drops and then take you off it? I have also

> > been reading about flare ups. If I'm understanding right, IGAN

> > isn't something that is always there? The protien and blood will

> > stop, and then what??? I understand that the damage that has been

> > done can't be repaired, but I guess I don't get how this works?.?

>

>

>

>

[Guest guest]

Thank you, I was wondering. I am really glad that I went to your

other web site. I even called my mom and told her about it and she

visited today. I understand that prednisone is the best out there,

my only concern was the side effects and after doing some research I

understand why it is used. Believe me, I will do everything and

anything that the doctors tell me to do, so that she can hopefully

not need other measures for years to come.

Lori

> In the situations where prednisone (an oral steroid) is clearly

called for,

> there is really no alternative. It's either that, or deal with the

severe

> symptoms of nephrotic syndrome, or possible acute kidney failure,

or chronic

> kidney failure in the near future.

>

> There can be some more marginal situations (mainly, milder

proteinuria)

> where it's not as clearcut whether prednisone would be beneficial

or not.

> But with pediatric IgAN, most of the time, prednisone does the job.

>

> But no, there are really NO alternatives to oral steroids when

they are

> needed. If anyone is looking for a miracle treatment in the world

of kidney

> disease, prednisone is pretty close to being one.

>

> Pierre

[Guest guest]

Thank you, I was wondering. I am really glad that I went to your

other web site. I even called my mom and told her about it and she

visited today. I understand that prednisone is the best out there,

my only concern was the side effects and after doing some research I

understand why it is used. Believe me, I will do everything and

anything that the doctors tell me to do, so that she can hopefully

not need other measures for years to come.

Lori

> In the situations where prednisone (an oral steroid) is clearly

called for,

> there is really no alternative. It's either that, or deal with the

severe

> symptoms of nephrotic syndrome, or possible acute kidney failure,

or chronic

> kidney failure in the near future.

>

> There can be some more marginal situations (mainly, milder

proteinuria)

> where it's not as clearcut whether prednisone would be beneficial

or not.

> But with pediatric IgAN, most of the time, prednisone does the job.

>

> But no, there are really NO alternatives to oral steroids when

they are

> needed. If anyone is looking for a miracle treatment in the world

of kidney

> disease, prednisone is pretty close to being one.

>

> Pierre

[Guest guest]

has been taking 80mg a day for almost 3 weeks, so far her BP

isn't going up, and there is no bloating. Also her levels are

slowly going down to normal. I think that it has a lot to do with

the prednisone. I don't like all the medications either, but if it

will help her and it has I have to give it to her.

> Hi Esther,

>

> I understand your apprehension about the steroids, which is what

the

> Prednisone is. However, when they do their job and are used for a

short term

> temporary treatment, there is really no substitute.

>

> Definitely do not start any natural substances without checking

with your

> doctor because there are a number of herbal or natural medications

that can be

> harmful for those with kidney disease.

>

> Prednisone can be a great drug and has brought the IgAN under

control for

> many of our members.

>

>

>

> In a message dated 12/15/2004 12:57:16 PM Pacific Standard Time,

> pick39@y... writes:

>

> > Hi Everyone:

> > What would happen if we do not give the prescribed medicine to

our children?

> > I mean the Prednisone sounds like cortisone or steroids? I

would prefer a

> > more natural way of helping my son. I know I am jumping the gun

here but I

> > was wondering about this. Drugs scare me.

> > Thank you,

> > Esther

>

>

>

>