High dose prednisone questions...

[Guest guest]

Hi guys,

Can anyone out there please fill me on on their experiences with IV high

dose prednisone? I believe Harley mentioned that he had undergone IV pred

quite some time ago.

I am writing on behalf of my 12 year old son with MPGN. Next Tuesday, we

are starting IV prednisone (1000 mg/dose) three times a week for two weeks.

The first week will be just prednisone. The second week will be pred +

cellcept. The theory is to induce remission with the prednisone and try to

maintain it with the cellcept. As theories go, it seems about as plausisble

as anything else; however, this kind of dose makes me very nervous. Any

information that anyone has would be ENORMOUSLY appreciated.

Thanks in advance!

Cy

[Guest guest]

CY,,,,,my 9 year old daughter had the same treatmenst they are fixin to give

your son,,,it worked very well,,,,,dont worry,,he will be just fine,,,she

just started eatting more,,and gained some weight,,,and face became

puffy,,,but other than that she was fine,,,,it made her blood test come back

a lot better,,,,so i was satisfied,,,,,crystal

[Guest guest]

cy,

my treatment is IV solu-medrol 1000mg/dose 3 days consecutive, every other

month( months 1,3,5) and then I also take 40 mg prednisone every other day. I

started this on February 16 and so far it is going good. The IV stuff isn't bad

at all, besides a bad taste in your mouth(like metal). I hope it does it trick.

They also have me on protonix to help keep my stomach settled down. The every

other day prednisone give your body a break, and so far it hasn't been too bad.

Hope this helps - if you have more questions, please ask. Harley

High dose prednisone questions...

Hi guys,

Can anyone out there please fill me on on their experiences with IV high

dose prednisone? I believe Harley mentioned that he had undergone IV pred

quite some time ago.

I am writing on behalf of my 12 year old son with MPGN. Next Tuesday, we

are starting IV prednisone (1000 mg/dose) three times a week for two weeks.

The first week will be just prednisone. The second week will be pred +

cellcept. The theory is to induce remission with the prednisone and try to

maintain it with the cellcept. As theories go, it seems about as plausisble

as anything else; however, this kind of dose makes me very nervous. Any

information that anyone has would be ENORMOUSLY appreciated.

Thanks in advance!

Cy

[Guest guest]

Harley,

Thanks for getting back to me so quickly. I'll show my son your message.

It's heartening to hear that your experience with the IV isn't too bad. The

neph warned us about the metal taste. Does drinking cold beverages or

anything help? Any need to start the procedure on an empty stomach?

Possible to play computer games during the procedure? I was going to bring

my lap top to the hospital to keep my son entertained.

I'll let you know how the cellcept/soluu-medrol combo goes for maintaining

the remission.

I remain most grateful for your response.

Cy

---- Original Message -----

To: <iga-nephropathy >

Sent: Friday, March 14, 2003 2:19 PM

Subject: Re: High dose prednisone questions...

> cy,

>

> my treatment is IV solu-medrol 1000mg/dose 3 days consecutive, every other

month( months 1,3,5) and then I also take 40 mg prednisone every other day.

I started this on February 16 and so far it is going good. The IV stuff

isn't bad at all, besides a bad taste in your mouth(like metal). I hope it

does it trick. They also have me on protonix to help keep my stomach

settled down. The every other day prednisone give your body a break, and so

far it hasn't been too bad. Hope this helps - if you have more questions,

please ask. Harley

> High dose prednisone questions...

>

>

> Hi guys,

>

> Can anyone out there please fill me on on their experiences with IV high

> dose prednisone? I believe Harley mentioned that he had undergone IV

pred

> quite some time ago.

>

> I am writing on behalf of my 12 year old son with MPGN. Next Tuesday,

we

> are starting IV prednisone (1000 mg/dose) three times a week for two

weeks.

> The first week will be just prednisone. The second week will be pred +

> cellcept. The theory is to induce remission with the prednisone and try

to

> maintain it with the cellcept. As theories go, it seems about as

plausisble

> as anything else; however, this kind of dose makes me very nervous. Any

> information that anyone has would be ENORMOUSLY appreciated.

>

> Thanks in advance!

>

> Cy

>

>

>

[Guest guest]

Cy,

Any beverage tastes bad for about 6 - 8 hours. I tried Pepsi, sierra mist,

water, milk - they were all bad. Food didn't taste bad though. Computer games

are fine, they put the IV in the back of your hand, that hurts less than when

they draw blood. I would eat first, and I sipped on pop during the hour

procedure. I questioned my neph why I wasn't taking another med with the

prednisone, sometimes they take azathioprine, is that the same as cellcept? Im

not sure what prednisone alone is going to do? any help? Harley

High dose prednisone questions...

>

>

> Hi guys,

>

> Can anyone out there please fill me on on their experiences with IV high

> dose prednisone? I believe Harley mentioned that he had undergone IV

pred

> quite some time ago.

>

> I am writing on behalf of my 12 year old son with MPGN. Next Tuesday,

we

> are starting IV prednisone (1000 mg/dose) three times a week for two

weeks.

> The first week will be just prednisone. The second week will be pred +

> cellcept. The theory is to induce remission with the prednisone and try

to

> maintain it with the cellcept. As theories go, it seems about as

plausisble

> as anything else; however, this kind of dose makes me very nervous. Any

> information that anyone has would be ENORMOUSLY appreciated.

>

> Thanks in advance!

>

> Cy

>

>

>

[Guest guest]

Harley,

Once again, thanks for getting back to me so fast. You are going a long way

in calming my nerves! This is beginning to seem more manageable.

Azathioprine is not the same as cellcept. The other name for cellcept is

mycophenylate mofetil (aka MMF - my spelling might be a little off there).

I've been so busy trying to figure out the prednisone part of the puzzle, I

haven't learned much about cellcept yet, beyond it's role in treating lupus.

The few papers I've read all say that it is well tolerated. Worst side

effect is leukopenia, which doesn't seem real common.

Cellcept seems to have a mixed reputation in treating kidney disease. At

the risk of sounding incredibly facile, it either works or it doesn't. Some

patients swear by it. Others have no response. My neph believes that it is

useful in maintaining a remission in lupus once it has started. However,

there's no information out there whether it will provide any benefit with

MPGN. I guess we'll let you know

Prior to this, we did 150 mg of cyclosporin twice a day. Although we got

fantastic protein control ('s protein:creatine ratio went from 5.8 to

0.44 in nothing flat), C3 continued to be a problem. Some docs do a

combined pred/cyclo regime (we were offered that as an alternative). Cyclo

has a down side (including nephrotoxicity), but if the pred isn't working,

you might want to mention it to your neph.

How long have you been taking Prednisone?

Thanks again for answering my questions. These emails from you have

absolutely made my day.

Cy

High dose prednisone questions...

> >

> >

> > Hi guys,

> >

> > Can anyone out there please fill me on on their experiences with IV

high

> > dose prednisone? I believe Harley mentioned that he had undergone IV

> pred

> > quite some time ago.

> >

> > I am writing on behalf of my 12 year old son with MPGN. Next

Tuesday,

> we

> > are starting IV prednisone (1000 mg/dose) three times a week for two

> weeks.

> > The first week will be just prednisone. The second week will be

pred +

> > cellcept. The theory is to induce remission with the prednisone and

try

> to

> > maintain it with the cellcept. As theories go, it seems about as

> plausisble

> > as anything else; however, this kind of dose makes me very nervous.

Any

> > information that anyone has would be ENORMOUSLY appreciated.

> >

> > Thanks in advance!

> >

> > Cy

> >

> >

> >

[Guest guest]

Cy,

I have only been taking prednisone since February 21, 2003. So far so good.

Some days are better than others, but nothing drastic. I am very active with

outdoor work and I play basketball once a week,along with walking at night, I

hope being as active as possible will help me with the prednisone side effects.

Another thing to mention, when they put the IV in, they will leave it in for the

three days if wants that. Make sure they don't tape it down too tight to

his skin, after day 2 the IV plastic was starting to cut into my skin, that hurt

the worst. Another tid bit, when they tape it down, make sure the top part of

the IV is not directly over the vein that the IV is in. You would think they

would know that, but mine didn't. Good luck and keep posted on the results.

Harley

High dose prednisone questions...

> >

> >

> > Hi guys,

> >

> > Can anyone out there please fill me on on their experiences with IV

high

> > dose prednisone? I believe Harley mentioned that he had undergone IV

> pred

> > quite some time ago.

> >

> > I am writing on behalf of my 12 year old son with MPGN. Next

Tuesday,

> we

> > are starting IV prednisone (1000 mg/dose) three times a week for two

> weeks.

> > The first week will be just prednisone. The second week will be

pred +

> > cellcept. The theory is to induce remission with the prednisone and

try

> to

> > maintain it with the cellcept. As theories go, it seems about as

> plausisble

> > as anything else; however, this kind of dose makes me very nervous.

Any

> > information that anyone has would be ENORMOUSLY appreciated.

> >

> > Thanks in advance!

> >

> > Cy

> >

> >

> >

[Guest guest]

Ah.... you answered what was going to be my next question. My son's best

friend is occationally treated with IV antibiotics. had been asking

me if he could keep his IV in the same way his friend does to minimize

getting stuck.

Thanks for all your words of wisdom. It was exactly what I'd been hoping to

find. I'll be sure to keep an extra eye out for when they tape him down.

We'll keep you in the loop. Please let us know how you are doing!

Cy

All the best.

Cy

High dose prednisone questions...

> > >

> > >

> > > Hi guys,

> > >

> > > Can anyone out there please fill me on on their experiences with

IV

> high

> > > dose prednisone? I believe Harley mentioned that he had

undergone IV

> > pred

> > > quite some time ago.

> > >

> > > I am writing on behalf of my 12 year old son with MPGN. Next

> Tuesday,

> > we

> > > are starting IV prednisone (1000 mg/dose) three times a week for

two

> > weeks.

> > > The first week will be just prednisone. The second week will be

> pred +

> > > cellcept. The theory is to induce remission with the prednisone

and

> try

> > to

> > > maintain it with the cellcept. As theories go, it seems about

as

> > plausisble

> > > as anything else; however, this kind of dose makes me very

nervous.

> Any

> > > information that anyone has would be ENORMOUSLY appreciated.

> > >

> > > Thanks in advance!

> > >

> > > Cy

> > >

> > >

> > >