Re: Prednisone

January 7, 2001

Hard to say exactly Pam, and I hate to play doctor, but here is what I

think. Anything over 3 months use requires tapering down gradually, or else

adrenal insufficiency can be the result (but there's no danger if tapered

down). So, in that sense, longer than 3 months could be considered long

term. I would consider a year or more to be long term, myself. On the other

hand, for various conditions (like asthma, arthritis, but not usually IgAN),

people have taken oral steroids for years and years, decades even, when the

treatment of their disease warrants the very real risks associated with

long-term steroid use. But prednisone should never be used for long periods

without a good reason, and this is where I question its use for attempting

to slow down what is often a very slowly-progressing disease anyway. My own

opinion is that the risks may outweigh the benefits in that scenario, but

that's a layman's opinion, and I'm not the one who has to take it. I think

ACE inhibitors have a much better use than prednisone in this role.

Normally, I would think that in a case like 's, the prednisone should be

stopped once the acute phase of the disease has been beaten back and the

disease has either remissed or is in a stable situation. It's impossible for

me to say when that is, but I would think that would be known by about 3

months or so. After that, whether he has hypertension or not, he stays on an

ACE inhibitor, and he has a good chance to it won't come back in the acute

form he's had already. Beyond that, my feeling is that the Prednisone is

being used just for the hope it provides that it might retard progression of

the disease. This may or may not be something you want. I think you need to

have a long talk with your doctor about this, as in, what does he expect to

accomplish with this plan of a year or more on prednisone, and is it really

necessary. Perhaps his thinking is that the disease will flare up again if

the prednisone is stopped. But my response to that would be, well, if it

does, then you can give him the prednisone again. I think that given the

adverse effects of such a drug, it's a perfectly reasonable question to be

asking. As for stopping and restarting if it becomes necessary, well, that's

what they do all the time, in every disease that is treated with prednisone.

This is about the best I can do, and I hope it helps.

Pierre

RE: Nervous

> >stomache/stomache

> > > > > > > >pains

> > > > > > > > > > >>>>

> > > > > > > > > > >>>>> Robyn, Sophie, , thank you for the advice on

> >this

> > > > > > > >matter. I was

> > > > > > > > > > >>>> just

> > > > > > > > > > >>>>> getting a bit fed up with it all, but think that

> >things

> > > > > > > >have calmed

> > > > > > > > > > >>>> down.

> > > > > > > > > > >>>>> Not sure if it was the fruit or not, I was going

> >easy on

> > > > > > > >it, two a

> > > > > > > > > >day

> > > > > > > > > > >>>> (one

> > > > > > > > > > >>>>> orange, one banana)...but I also hadn't had any

> >fruit in

> > > >a

> > > > > > > >few weeks

> > > > > > > > > > >>>> either,

> > > > > > > > > > >>>>> so its hard to say.

> > > > > > > > > > >>>>> I do remember your post on allergies , about

> >the

> > > > > > > >bananas... I

> > > > > > > > > > >>>> thought

> > > > > > > > > > >>>>> that was pretty weird. Hopefully thats not my

> >problem,

> > > >no

> > > > > > > >rash yet!

> > > > > > > > > > >> Hehe

> > > > > > > > > > >>>>>

> > > > > > > > > > >>>>> Ginger

> > > > > > > > > > >>>>>

> > > > > > > > > > >>>>>> Did you see my back message on allergies. I have

> > > > > > > >developed a

> > > > > > > > > >severe

> > > > > > > > > > >>>>>> allergic reaction to bananas, when previously

fine

> >with

> > > > > > > >them. I

> > > > > > > > > >get

> > > > > > > > > > >> a

> > > > > > > > > > >>>>>> rash,

> > > > > > > > > > >>>>>> stomach cramps, vomiting etc etc. Because of the

> >high

> > > > > > > >potassium in

> > > > > > > > > > >>>> bananas

> > > > > > > > > > >>>>>> I was asked to avoid them, not a problem as they

> >make

> > > >me

> > > > > > > >so ill

> > > > > > > > > >LOL.

> > > > > > > > > > >>>> Other

> > > > > > > > > > >>>>>> fruits can also cause problems, if I were you I

> >would

> > > >try

> > > >a

> > > > > > > > > > >> elimination

> > > > > > > > > > >>>>>> process exercise, cut one or all fruits you eat

out

> >for

> > > >a

> > > > > > > >week at a

> > > > > > > > > > >>>> time,

> > > > > > > > > > >>>>>> and see how you feel, then reintroduce them one

at

> >a

> > > > > > > >time.....if

> > > > > > > > > >you

> > > > > > > > > > >>>> are

> > > > > > > > > > >>>>>> ill, then you know which is the culprit. It

might

> >also

> > > >be

> > > > > > > >worth

> > > > > > > > > > >>>> discussing

> > > > > > > > > > >>>>>> this with your Nephrologist.

> > > > > > > > > > >>>>>>

> > > > > > > > > > >>>>>> Good luck

> > > > > > > > > > >>>>>>

> > > > > > > > > > >>>>>

> > > > > > >

> > >_________________________________________________________________

> > > > > > > > > > >>>>> Get your FREE download of MSN Explorer at

> > > > > > > >http://explorer.msn.com

> > > > > > > > > > >>>>>

> > > > > > > > > > >>>>> eGroups Sponsor

> > > > > > > > > > >>>>>

January 7, 2001

Pierre, my husband and I feel the same way about the prednisone. We are

concerned that 's doctor mentioned up to a year and a half. At three

months, we are going to ask him those exact questions. I have another

question for you. We have been reading about celiac disease and the fact

that some IgAN patients also have this. It seems from what we have been

readng that IgA plays a major role in that disease as well--gluten

intolerance is basically what the disease is. Do you have any knowledge of

this disease in relation to IgAN? As always, we treasure your opinion and

thank you for taking the time to answer our questions with such depth. Pam

>

>Reply-To: iga-nephropathyegroups

>To: <iga-nephropathyegroups>

>Subject: Re: Re: Prednisone

>Date: Sun, 7 Jan 2001 21:17:28 -0500

>

>Hard to say exactly Pam, and I hate to play doctor, but here is what I

>think. Anything over 3 months use requires tapering down gradually, or else

>adrenal insufficiency can be the result (but there's no danger if tapered

>down). So, in that sense, longer than 3 months could be considered long

>term. I would consider a year or more to be long term, myself. On the other

>hand, for various conditions (like asthma, arthritis, but not usually

>IgAN),

>people have taken oral steroids for years and years, decades even, when the

>treatment of their disease warrants the very real risks associated with

>long-term steroid use. But prednisone should never be used for long periods

>without a good reason, and this is where I question its use for attempting

>to slow down what is often a very slowly-progressing disease anyway. My own

>opinion is that the risks may outweigh the benefits in that scenario, but

>that's a layman's opinion, and I'm not the one who has to take it. I think

>ACE inhibitors have a much better use than prednisone in this role.

>Normally, I would think that in a case like 's, the prednisone should

>be

>stopped once the acute phase of the disease has been beaten back and the

>disease has either remissed or is in a stable situation. It's impossible

>for

>me to say when that is, but I would think that would be known by about 3

>months or so. After that, whether he has hypertension or not, he stays on

>an

>ACE inhibitor, and he has a good chance to it won't come back in the acute

>form he's had already. Beyond that, my feeling is that the Prednisone is

>being used just for the hope it provides that it might retard progression

>of

>the disease. This may or may not be something you want. I think you need to

>have a long talk with your doctor about this, as in, what does he expect to

>accomplish with this plan of a year or more on prednisone, and is it really

>necessary. Perhaps his thinking is that the disease will flare up again if

>the prednisone is stopped. But my response to that would be, well, if it

>does, then you can give him the prednisone again. I think that given the

>adverse effects of such a drug, it's a perfectly reasonable question to be

>asking. As for stopping and restarting if it becomes necessary, well,

>that's

>what they do all the time, in every disease that is treated with

>prednisone.

>This is about the best I can do, and I hope it helps.

>Pierre

>

> RE: Nervous

> > >stomache/stomache

> > > > > > > > >pains

> > > > > > > > > > > >>>>

> > > > > > > > > > > >>>>> Robyn, Sophie, , thank you for the advice

>on

> > >this

> > > > > > > > >matter. I was

> > > > > > > > > > > >>>> just

> > > > > > > > > > > >>>>> getting a bit fed up with it all, but think that

> > >things

> > > > > > > > >have calmed

> > > > > > > > > > > >>>> down.

> > > > > > > > > > > >>>>> Not sure if it was the fruit or not, I was going

> > >easy on

> > > > > > > > >it, two a

> > > > > > > > > > >day

> > > > > > > > > > > >>>> (one

> > > > > > > > > > > >>>>> orange, one banana)...but I also hadn't had any

> > >fruit in

> > > > >a

> > > > > > > > >few weeks

> > > > > > > > > > > >>>> either,

> > > > > > > > > > > >>>>> so its hard to say.

> > > > > > > > > > > >>>>> I do remember your post on allergies ,

>about

> > >the

> > > > > > > > >bananas... I

> > > > > > > > > > > >>>> thought

> > > > > > > > > > > >>>>> that was pretty weird. Hopefully thats not my

> > >problem,

> > > > >no

> > > > > > > > >rash yet!

> > > > > > > > > > > >> Hehe

> > > > > > > > > > > >>>>>

> > > > > > > > > > > >>>>> Ginger

> > > > > > > > > > > >>>>>

> > > > > > > > > > > >>>>>> Did you see my back message on allergies. I

>have

> > > > > > > > >developed a

> > > > > > > > > > >severe

> > > > > > > > > > > >>>>>> allergic reaction to bananas, when previously

>fine

> > >with

> > > > > > > > >them. I

> > > > > > > > > > >get

> > > > > > > > > > > >> a

> > > > > > > > > > > >>>>>> rash,

> > > > > > > > > > > >>>>>> stomach cramps, vomiting etc etc. Because of

>the

> > >high

> > > > > > > > >potassium in

> > > > > > > > > > > >>>> bananas

> > > > > > > > > > > >>>>>> I was asked to avoid them, not a problem as

>they

> > >make

> > > > >me

> > > > > > > > >so ill

> > > > > > > > > > >LOL.

> > > > > > > > > > > >>>> Other

> > > > > > > > > > > >>>>>> fruits can also cause problems, if I were you I

> > >would

> > > > >try

> > > > >a

> > > > > > > > > > > >> elimination

> > > > > > > > > > > >>>>>> process exercise, cut one or all fruits you eat

>out

> > >for

> > > > >a

> > > > > > > > >week at a

> > > > > > > > > > > >>>> time,

> > > > > > > > > > > >>>>>> and see how you feel, then reintroduce them one

>at

> > >a

> > > > > > > > >time.....if

> > > > > > > > > > >you

> > > > > > > > > > > >>>> are

> > > > > > > > > > > >>>>>> ill, then you know which is the culprit. It

>might

> > >also

> > > > >be

> > > > > > > > >worth

> > > > > > > > > > > >>>> discussing

> > > > > > > > > > > >>>>>> this with your Nephrologist.

> > > > > > > > > > > >>>>>>

> > > > > > > > > > > >>>>>> Good luck

> > > > > > > > > > > >>>>>>

> > > > > > > > > > > >>>>>

> > > > > > > >

> > > >_________________________________________________________________

> > > > > > > > > > > >>>>> Get your FREE download of MSN Explorer at

> > > > > > > > >http://explorer.msn.com

> > > > > > > > > > > >>>>>

> > > > > > > > > > > >>>>> eGroups Sponsor

> > > > > > > > > > > >>>>>

January 11, 2001

In IgAN, prednisone is used when a patient is in nephrotic syndrome (often

IV at first, followed by oral for a few weeks/months). In regular chronic

IgAN, it is used investigationally to see if it might retard progression of

the disease. It is used in the alternate day dosing method, 50 mg on

alternate days. So far, I think the results have been disappointing.

Prednisone has many potentially serious side effects, so it's not something

to take lightly.

A number of our members have been on it recently, or are currently taking

it, so they might be better able to provide some practical information. I've

never been on steroids for IgAN.

For general information on prednisone, I've added a file in the Files

section of our eGroups site.

Pierre

Outlook

> >

> > > Many of you seem to have a long history of experience with the

> > > disease. It is great that some of you have done so well.

> > >

> > > I have no idea where I am in the progression. What are the big

> > > things be concerned about?

> > >

> > > I have a 24 hr protienuira level of 1500mg, normal blood creatnine

> > > levels (1.1), BP under control (120-130/60-70), experience

> > > macroscopic hematuria with infections, and take 40mg Lisinopril

> (ACE

> > > inhibitor) daily. I have no other sympoms.

> > >

> > > Is there anyone else with the same or similar condition? If so

> (or

> > > if you were at this stage), what treatements did you use?

> > >

> > > Thanks for everything!

> > >

> > > eGroups Sponsor

> > >

March 9, 2001

I was on it until the beginning of February. I was taken off because

of my well-document ulcer problems (I've now been out of the hospital

since 2/24, althought my hematocrit level is still an anemic 21.7).

I can't say I miss Prednisone. As part of the withdrawal, I

developed acne over most of my chest and head. I'm still treating it

3 weeks later with Sodium Benzoate and antibiotics. Sometimes I

think it is never going away.

Since getting off of Prednisone, I've come to understand just how

much of a pain it was to take it -- hunger pangs, shaking hands, and

of course stomach pain all were part of the drug. I'm now free of

that.

On the other hand, I'm not sure if this is going to hasten ESRD or if

it is going to continue at the same rate. My creatinine levels have

actually gone down since getting off of Prednisone.

Walt

March 9, 2001

How long were you on the Prednisone? I have been on for almost 3

months. I am doing another 24 hour urine on Sunday. At the time I

get the results, I'm probably going to ask the doctor to dose me

down. My legs are weak and swollen (new this week and my not be

related to Prednisone) and I am just experiencing all other sorts of

effects. It changes on a daily basis. My favorite side effect is

dark facial hair that seems to be growing by leaps and bounds. I

feel like Harry from Harry and the s. I've never used Sally

Hansen bleach in my life until now! It seems we are going to become

good friends!

What I totally love is that this week two of my friends were

prescribed Prednisone in the 6-day dose pack. The doctors hand this

stuff out like candy, but it's up to you to either read the insert

the pharmacy gives you or use the internet. Of course, these people

are not in any danger because they are only taking it for 6 days.

One of the people didn't even want to take it because of my

problems. But now they realize that I'm not wrong to be paranoid

about taking it long-term.

Thanks for the reply.

> I was on it until the beginning of February. I was taken off

because

> of my well-document ulcer problems (I've now been out of the

hospital

> since 2/24, althought my hematocrit level is still an anemic 21.7).

>

> I can't say I miss Prednisone. As part of the withdrawal, I

> developed acne over most of my chest and head. I'm still treating

it

> 3 weeks later with Sodium Benzoate and antibiotics. Sometimes I

> think it is never going away.

>

> Since getting off of Prednisone, I've come to understand just how

> much of a pain it was to take it -- hunger pangs, shaking hands,

and

> of course stomach pain all were part of the drug. I'm now free of

> that.

>

> On the other hand, I'm not sure if this is going to hasten ESRD or

if

> it is going to continue at the same rate. My creatinine levels

have

> actually gone down since getting off of Prednisone.

>

> Walt

March 9, 2001

Hi Walt

I was just thinking that we had not heard from you for a while. Glad to

hear that you are still managing to keep at home, and out of the hospital!

Bad luck with the acne, but I guess you would rather that then the other

problems you suffered with Pred.

I am praying that you remain stable off it too.

Keep well my friend.

Warm wishes

Re: Prednisone

I was on it until the beginning of February. I was taken off because

of my well-document ulcer problems (I've now been out of the hospital

since 2/24, althought my hematocrit level is still an anemic 21.7).

I can't say I miss Prednisone. As part of the withdrawal, I

developed acne over most of my chest and head. I'm still treating it

3 weeks later with Sodium Benzoate and antibiotics. Sometimes I

think it is never going away.

Since getting off of Prednisone, I've come to understand just how

much of a pain it was to take it -- hunger pangs, shaking hands, and

of course stomach pain all were part of the drug. I'm now free of

that.

On the other hand, I'm not sure if this is going to hasten ESRD or if

it is going to continue at the same rate. My creatinine levels have

actually gone down since getting off of Prednisone.

Walt

March 9, 2001

:

I started on it on 12/6/2000. I only got off of it because of the

ulcers that the Prednisone burned all along my small intestine. I

bled out 34 units of blood before they found and cauterized the last

of the ulcers.

As for the facial hair -- I don't know what to tell you. Of course,

for guys, it's easy to shave off.

Of course, I almost had the opposite problem. At one point, they

wanted to prescribe estrogen for me to stop the bleeding. They

couldn't because it causes clotting, and I had already developed a

blood clot in my left calf from being bedridden from the ulcers. One

of the side effects was going to be gynomastia. The last thing I

need is large breasts.

Walt

March 9, 2001

I've been reading all of the postings, but been concentrating more on

working. Because I missed so many days, and because we were a small

company, I didn't get paid for over a month and a half. Keeping my

head down trying to catch up.

Since my wife is taking care of the kids until they are out of

school, it was a big strain to have no income. Luckily, my company

had Short Term Disability, but it will take forever for the insurance

company to cover the claim.

March 9, 2001

Now I'm worried about the acne thing. I can take not feeling bad

inside, but when my appearance starts being jeopardized, I am not

happy. I already lost all of the muscle tone in my legs in the first

2 weeks of the meds. I won't be wearing shorts this summer. Well, I

guess I should get off my can and force myself to exercise more

consistently.

Most everything I've read says that the side effects go away once you

get off. I guess that means I can build that muscle up again.

Pierre, I wish I could help you with the hair thing. I've never been

able to grow long hair. I'll let you know if something changes her

in the next month or so. I just need to either get a mustach groomer

(my family swears they can't tell how long the hair is getting) or a

good waxer.

I did buy a book called " Coping with Prednisone " . It was somewhat

helpful. It was a personal account of a woman with a rare lung

disease (now in remission) and her doctor sister. It was just

another source of information. I had already gathered most of the

information from reading the internet, but it was good to get a

personal account.

> Listen, I wouldn't mind taking some of that prednisone if I thought

the hair

> would grow on top of my head -- but I guess they can't guarantee

that eh?

>

> Nice to hear you're doing Ok, Walt, and , nice to hear from

you too.

>

> Pierre

>

> Re: Prednisone

>

> > :

> >

> > I started on it on 12/6/2000. I only got off of it because of the

> > ulcers that the Prednisone burned all along my small intestine. I

> > bled out 34 units of blood before they found and cauterized the

last

> > of the ulcers.

> >

> > As for the facial hair -- I don't know what to tell you. Of

course,

> > for guys, it's easy to shave off.

> >

> > Of course, I almost had the opposite problem. At one point, they

> > wanted to prescribe estrogen for me to stop the bleeding. They

> > couldn't because it causes clotting, and I had already developed a

> > blood clot in my left calf from being bedridden from the ulcers.

One

> > of the side effects was going to be gynomastia. The last thing I

> > need is large breasts.

> >

> > Walt

> >

March 9, 2001

I have been reading all the posts about prednisone. Are you all on every

day therapy? I know I mentioned this before, but my son is taking it every

other day, and so far (three months) he has had no side effects-maybe 16 has

something to do with it. The day in between gives his body a chance to

rebound. Pam

>

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Prednisone

>Date: Fri, 09 Mar 2001 20:31:16 -0000

>

>Does anyone on this board who is also currently taking Prednisone

>want to communicate off the board about our daily ups and downs? It

>seems like the majority of people in the group are not on Prednisone,

>and that's really where I need the communication. I need a

>Prednisone buddy! Let me know. Thanks.

>

>Don't get me wrong, I do find the other communication on the board

>invaluable.

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

March 10, 2001

I'm on alternate-day therapy, 80 mg. Sometimes the day in between

seems worse. I'm almost 34. So yes, I suspect that age has

something to do with it. I'm happy for him that it hasn't been too

unpleasant. I think the main thing for me is that it ages your

body. When you are 16 you are not as worried about thin skin or

osteoporosis or hardening of the arteries.

> I have been reading all the posts about prednisone. Are you all on

every

> day therapy? I know I mentioned this before, but my son is taking

it every

> other day, and so far (three months) he has had no side effects-

maybe 16 has

> something to do with it. The day in between gives his body a

chance to

> rebound. Pam

>

> >From: " " <brendarisinger@y...>

> >Reply-To: iga-nephropathy@y...

> >To: iga-nephropathy@y...

> >Subject: Prednisone

> >Date: Fri, 09 Mar 2001 20:31:16 -0000

> >

> >Does anyone on this board who is also currently taking Prednisone

> >want to communicate off the board about our daily ups and downs?

It

> >seems like the majority of people in the group are not on

Prednisone,

> >and that's really where I need the communication. I need a

> >Prednisone buddy! Let me know. Thanks.

> >

> >Don't get me wrong, I do find the other communication on the board

> >invaluable.

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

March 10, 2001

, I know what you mean. The main thing 's doctor is worried about

at this time is cataracts. So far, so good, though. Good luck to you.

's nephrologist weaned him from 80 mg every other day to 60 EOD, and

expects to decrease to 40 EOD in May where he will remain for a year or so.

How has your response been to the steroids as far as protein and hematuria?

Pam

>

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Re: Prednisone

>Date: Sat, 10 Mar 2001 15:22:40 -0000

>

>I'm on alternate-day therapy, 80 mg. Sometimes the day in between

>seems worse. I'm almost 34. So yes, I suspect that age has

>something to do with it. I'm happy for him that it hasn't been too

>unpleasant. I think the main thing for me is that it ages your

>body. When you are 16 you are not as worried about thin skin or

>osteoporosis or hardening of the arteries.

>

> > I have been reading all the posts about prednisone. Are you all on

>every

> > day therapy? I know I mentioned this before, but my son is taking

>it every

> > other day, and so far (three months) he has had no side effects-

>maybe 16 has

> > something to do with it. The day in between gives his body a

>chance to

> > rebound. Pam

> >

> > >From: " " <brendarisinger@y...>

> > >Reply-To: iga-nephropathy@y...

> > >To: iga-nephropathy@y...

> > >Subject: Prednisone

> > >Date: Fri, 09 Mar 2001 20:31:16 -0000

> > >

> > >Does anyone on this board who is also currently taking Prednisone

> > >want to communicate off the board about our daily ups and downs?

>It

> > >seems like the majority of people in the group are not on

>Prednisone,

> > >and that's really where I need the communication. I need a

> > >Prednisone buddy! Let me know. Thanks.

> > >

> > >Don't get me wrong, I do find the other communication on the board

> > >invaluable.

> > >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

March 10, 2001

Listen, I wouldn't mind taking some of that prednisone if I thought the hair

would grow on top of my head -- but I guess they can't guarantee that eh?

Nice to hear you're doing Ok, Walt, and , nice to hear from you too.

Pierre

Re: Prednisone

> :

>

> I started on it on 12/6/2000. I only got off of it because of the

> ulcers that the Prednisone burned all along my small intestine. I

> bled out 34 units of blood before they found and cauterized the last

> of the ulcers.

>

> As for the facial hair -- I don't know what to tell you. Of course,

> for guys, it's easy to shave off.

>

> Of course, I almost had the opposite problem. At one point, they

> wanted to prescribe estrogen for me to stop the bleeding. They

> couldn't because it causes clotting, and I had already developed a

> blood clot in my left calf from being bedridden from the ulcers. One

> of the side effects was going to be gynomastia. The last thing I

> need is large breasts.

>

> Walt

>

March 10, 2001

I would be interested in the answer to that too. Avoiding side effects is

the whole idea behind alternate-day therapy in the first place. This isn't

done only for IgAN, but also for other autoimmune-like diseases that respond

to prednisone.

Pierre

Prednisone

> >Date: Fri, 09 Mar 2001 20:31:16 -0000

> >

> >Does anyone on this board who is also currently taking Prednisone

> >want to communicate off the board about our daily ups and downs? It

> >seems like the majority of people in the group are not on Prednisone,

> >and that's really where I need the communication. I need a

> >Prednisone buddy! Let me know. Thanks.

> >

> >Don't get me wrong, I do find the other communication on the board

> >invaluable.

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

March 10, 2001

I have no idea how my dr arrived at 80 mg EOD. I have only heard of

people being on 60 mg EOD. I had a lot of protein in my urine when I

first presented. He originally told me I would need to be on for 3

or 4 months. There is no way even if he reduces the dosage that I am

going to be on this stuff for over a year. I just will not do it. I

will go insane.

Pamela, so far the hematuria seems to be less persistant than

before. I'm sure it's there, but I cannot see it. The protein went

from 4000+ to 3000+ in one month on the Pred. The important thing was

that my renal function went from 1.6 to 1.2. Tomorrow I'm doing

another 24 hour urine. I will have the results back next week. I'm

torn. If the results are good, then I want to start dosing down. If

they are not so good, then I'm right back where I started. I am

going to assume the results will be an improvement over last time and

that it will just keep getting better!

This morning, not a Pred day, I walked 30 minutes on my treadmill.

This evening my ankles are killing me because my ankles are so weak.

I'm having a hard time figuring out what shoes to wear.

Wish me luck on my 24 hour urine! It is so funny to have to collect

your urine for 24 hours. I'm sure there are some good stories

there. I am terrified of the container opening up as I'm cruising

down the freeway on Monday morning! Only those of use who have ever

done this would understand.

March 11, 2001

How did they arrive at the 80 mg dose? Perhaps 50 mg would do as well.

Pierre

wrote:

>

> I'm on alternate-day therapy, 80 mg. Sometimes the day in between

> seems worse. I'm almost 34. So yes, I suspect that age has

> something to do with it. I'm happy for him that it hasn't been too

> unpleasant. I think the main thing for me is that it ages your

> body. When you are 16 you are not as worried about thin skin or

> osteoporosis or hardening of the arteries.

>

March 12, 2001

Thanks Walt - I have enough problems with chronic acne from the depo

provera. I can add that to my list of reasons why I don't want to take

prednisone!

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March 12, 2001

I understand your worries about losing your collection - I have to catch a

bus to the hospital as I don't have a car. And the blood tests are first

come first served, so you clutch your pee to your chest on the bus, and then

again while you are in a room full of others doing the same! It would be

funny if I wasn't so afraid I would have to take another day off work to do

it all again.

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March 12, 2001

Good luck to you, . The biggest problem with my son at the

moment are his mood swings on the prednisone. I think when he drinks

caffienated beverages it makes it worse. Between being a 16-year-old boy

and on steroids, he has major temper tantrums lately. But, the pred has

helped him quite a bit. His protein and creatinine are now normal. I guess

we'll just go by what his doctor prescribes unless he gets some really nasty

side effects.

>

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Re: Prednisone

>Date: Sun, 11 Mar 2001 03:35:34 -0000

>

>I have no idea how my dr arrived at 80 mg EOD. I have only heard of

>people being on 60 mg EOD. I had a lot of protein in my urine when I

>first presented. He originally told me I would need to be on for 3

>or 4 months. There is no way even if he reduces the dosage that I am

>going to be on this stuff for over a year. I just will not do it. I

>will go insane.

>

>Pamela, so far the hematuria seems to be less persistant than

>before. I'm sure it's there, but I cannot see it. The protein went

>from 4000+ to 3000+ in one month on the Pred. The important thing was

>that my renal function went from 1.6 to 1.2. Tomorrow I'm doing

>another 24 hour urine. I will have the results back next week. I'm

>torn. If the results are good, then I want to start dosing down. If

>they are not so good, then I'm right back where I started. I am

>going to assume the results will be an improvement over last time and

>that it will just keep getting better!

>

>This morning, not a Pred day, I walked 30 minutes on my treadmill.

>This evening my ankles are killing me because my ankles are so weak.

>I'm having a hard time figuring out what shoes to wear.

>

>Wish me luck on my 24 hour urine! It is so funny to have to collect

>your urine for 24 hours. I'm sure there are some good stories

>there. I am terrified of the container opening up as I'm cruising

>down the freeway on Monday morning! Only those of use who have ever

>done this would understand.

>

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March 12, 2001

Hi :

I am also currently on pred and I don't like it either. I've done the EOD @ 125mg but am currently on 60mg daily. The alternate day plan is somewhat better for me but I wouldn't want to live on the difference. My email is kevinmcburney@... if you want to compare side effects as they are many and varied but always unpleasant.

in Ga.

March 13, 2001

I guess the question I would ask my doctor is " Am I steroid responsive " ?

and what is the criteria he uses to determine that? It must be a judgement

call as to how much better you become on the prednisone vs. how your

creatinine and protein do off the drug. My son 's recovery was so

dramatic that it could almost be described as miraculous. He was very, very

ill over Christmas, in the hospital, high fever and getting higher each day,

deteriorating kidney function to one half and sliding, and swollen, inflamed

kidneys. Within one hour of the first IV steroid, his fever was gone, and he

had an appetite. Within one week his creatinine was normal and no protein.

He still has trace blood, but that could be from the other kidney condition

he has, thin basement membrane disease. So for us, it's a no brainer for

the time being. He's been on prednisone now for three months, 60 MG EOD.

He started at 80 ED, then 80 EOD. When he goes on 40 EOD in a few months,

he will stay on that dose for about a year. His only, I think, side effect

right now is terrible mood swings and almost manic exuberence at times.

But, and this is a big but, his response does not stay as positive as it has

been and his side effects become more severe, we will take him off the

prednisone-slowly and with his doctor's guidance, of course.

>

>Reply-To: iga-nephropathy

>To: <iga-nephropathy >

>Subject: Re: Prednisone

>Date: Mon, 12 Mar 2001 23:06:09 -0500

>

>Hi :

>

>I am also currently on pred and I don't like it either. I've done the EOD @

>125mg but am currently on 60mg daily. The alternate day plan is somewhat

>better for me but I wouldn't want to live on the difference. My email is

>kevinmcburney@... if you want to compare side effects as they are

>many and varied but always unpleasant.

>

> in Ga.

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March 13, 2001

I agree with Pamela - my neph seems to think that I fall into the group that

responds well to steroids, though I have no idea what if any information he

used to make that decision (I get the sense that he wants me to take them as

he considers that there is not good reason not to rather than that there is

a good reason to). Is there anyone who has come off steroids and maintained

zero protein loss? And if so how long has this maintained? I think my

husband has enough of my mood swings without steroid swings as well!

_________________________________________________________________________

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March 13, 2001

Prednisone can also cause anxiety in some, or make them " hyper " . Could be

why you detect a problem with caffeinated beverages.

Pierre

Re: Re: Prednisone

> Good luck to you, . The biggest problem with my son at the

> moment are his mood swings on the prednisone. I think when he drinks

> caffienated beverages it makes it worse. Between being a 16-year-old boy

> and on steroids, he has major temper tantrums lately. But, the pred has

> helped him quite a bit. His protein and creatinine are now normal. I

guess

> we'll just go by what his doctor prescribes unless he gets some really

nasty

> side effects.

>

March 16, 2001

You welcome.

Don't loose hope. They 'll have to stop it a day or another

Without smiling, I know how hard it is to support such a medicine, above all

with all the side effect.

My brother, who is a doctor, always says : medicines that work the best are

medicines with the most side effects.

Seeing how much pred have, sure it's a good medicine LOL...

Another thing : ask your neph about it. When I stopped pred, nothing had

evoluted , perhaps yes, a little bit but in the wrong way. My neph told me that

the results could not be seen only 6 months after the end of the treatment. For

me, it'll be in end June, I'm waiting for it impatiently. As for every

treatment, we have to be patient. The body doesn't react as a mechanic.

Well, have fun, it's the best methos to forget all this stuff

Sophie

>Messsage du 16/03/2001 10:16

>De : <iga-nephropathy >

>A : <iga-nephropathy >

>Copie à :

>Objet : Re: Prednisone

>

> Thanks Sophie. My neph talks about it as if I will be taking it for years,

> but others don't seem to be on them for so long. Considering the potential

> side effects, several years seems extreme. Apparently my symptoms (aside

> from the ones they can't explain) fall into the category of seems to work.

> I think he means the proteinuria, but I always come out of his rooms in

> shock!

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

March 16, 2001

Hi Hi Sophie

You're a ray of sunshine to us Sophie, and I definitely agree with your

attitude. Have fun and keep smiling, even when times are rough. I have

been doing a lot more smiling since finding this group, amazing what a bit

of support does for you. In other words I am chilled LOL.

know what you mean about coming out of the Nephs office in shock, been

there, done that, worn the T'Shirt so to speak. Now I leave my Nephs office

more frustrated at the lack of answers on his part, it is he who looks

stunned nowadays, at my never-ending list of requests for information, and

the fact that I have the tenacity to cross question him (secretly I enjoy it

you know, some kind of sick revenge for the biopsy needle LOL!!!!).

Oh well everyone have a super duper weekend, keep well and keep CHILLED. As

for temperature Sophie in the UK, forget it, a miserly 1c, high winds and

sleet and snow for the weekend, so chilled will be easy LOL.

Best wishes

Re: Prednisone

You welcome.

Don't loose hope. They 'll have to stop it a day or another

Without smiling, I know how hard it is to support such a medicine, above all

with all the side effect.

My brother, who is a doctor, always says : medicines that work the best are

medicines with the most side effects.

Seeing how much pred have, sure it's a good medicine LOL...

Another thing : ask your neph about it. When I stopped pred, nothing had

evoluted , perhaps yes, a little bit but in the wrong way. My neph told me

that the results could not be seen only 6 months after the end of the

treatment. For me, it'll be in end June, I'm waiting for it impatiently. As

for every treatment, we have to be patient. The body doesn't react as a

mechanic.

Well, have fun, it's the best methos to forget all this stuff

Sophie

>Messsage du 16/03/2001 10:16

>De : <iga-nephropathy >

>A : <iga-nephropathy >

>Copie à :

>Objet : Re: Prednisone

>

> Thanks Sophie. My neph talks about it as if I will be taking it for

years,

> but others don't seem to be on them for so long. Considering the

potential

> side effects, several years seems extreme. Apparently my symptoms (aside

> from the ones they can't explain) fall into the category of seems to work.

> I think he means the proteinuria, but I always come out of his rooms in

> shock!

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

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