Re: I Need Answers

[Guest guest]

I am new to this group. I posted a message on 5/7/01 to try to get an answer in regards to a bad reaction I had while taking the prednisone medication and wondered if anyone else had had such an experience, but I haven't heard anything. Please read message #2040.

I have been taking prednisone for eleven years and the only problems I have noticed were emotional outbursts. Anger, sorrow, depression, you name it.

But being on a lower dose (7.5) really cuts down on those problems. Have not had the emotional problems for about ten years now.

I wish I knew enough to answer your other questions. Others may have responded, but Yahoo has been really slow lately.

Mike in California

[Guest guest]

I can't answer most of your questions but I will do what I can. IgAN is

chronic if it takes a long time to develop, or acute if it progresses

quickly. I am tired all the time, but can do what is required - I don't get

anymore tired if I am very active than I do if I am not active (weird huh?).

I am having problems with my knees getting tired, sore and swollen, but

that is still under investigation (I have had a blood screen and am waiting

for the results to come back). I wouldn't worry too much about the tests -

I feel the same but my last 24 hour clearance was marginally better than the

one before which was worse than the one before that (down up down). The

medication that you are taking will also effect how you feel - my ACE

inhibitor dose has been reduced as the neph thinks that may be contributing

to some of my other problems. I had my biopsy in December 2000, and I

expect to face disruption and discomfort until we sort out a treatment plan

as we try different doses of different drugs. Good Luck

_________________________________________________________________________

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[Guest guest]

This has been very helpful. I will look up those sites for more info. By the way, what is HSP?

Thanks again!

[Guest guest]

, what is HSP?

HSP is Henoch-Schoenlein Purpura (I'm using the English variation on the German spelling of the name, as I believe this problem was discovered by either a German or an Austrian).

It's a systemic problem including both kidney and skin manifestations, hence the "purpura" in the name. On biopsy, the kidney of an HSP patient looks like the kidney of an IgAN patient, and this means that some scientists feel there is a relation between the two disorders.

If anyone can add more information, I'd be happy! I don't know that much about the connection.

Robin s

About Transplantation: organ donation and transplantation

[Guest guest]

Thanks, , for your input on it. I also am trying to take it one day at a time. I feel though that I don't get enough input from my neph, and many times when I complain about how I am feeling, even though he does explains how the disease works the kidneys, he also tells me that its just part of the disease, I don't always come out with a satisfying answer, and that worries me.

[Guest guest]

I really hate taking the prednisone. I started at a dosage of 80mg per day for two months. Gradually it has been reduced at a rate of 5mg per month.

But I have experienced many reactions since, not just the emotional problems, but physically.

I have gained an enormous amount of weight, not to leave out that my face, well, it's not my face anymore, it's so swelled up, some friends didn't even recognize me!

I hope that eventually, but soon enough, I can find a way to better cope with this disease and what it has done to me.

Thanks for your response,

Enid

[Guest guest]

I thought I might have already responded to you. The side effects to

Prednisone that I have had are:

hair growth on face

left leg problems (like the leg won't fully extend, almost gone since

dosing down)

increased hunger (has subsided with dosing down)

fatigue (more so on days when I don't take the Prednisone, subsides

and then occurs again each time I dose down)

I also had high protein in the 3000+ range. After 3 months on

Prednisone, I was at 317/mg day.

Your doctor should have told you to take a calcium supplement while

you are on the prednisone. That's the first thing my doctor told

me. In fact, he told me to take 3 tums every day. You may lose bone

density if you are not getting enough calcium. I suggest, if you

have not already, that you read up on the side effects of long-term

prednisone use. He monitors my potassium through blood work.

It is a miracle drug though. On the Today show this morning in their

Medical Breakthrough segment, they had a story of an 83 year old man

that lost his sense of smell and taste. He took prednisone and got

his senses back. Although, he lost them again, he was able to take

another course of prednisone, and it helped. I thought that was

interesting.

> I am new to this group. I posted a message on 5/7/01 to try to get

> an answer in regards to a bad reaction I had while taking the

> prednisone medication and wondered if anyone else had had such an

> experience, but I haven't heard anything. Please read message

#2040.

>

> I wonder, at what point is IGAN considered accute or chronic? Does

> anyone have trouble with their energy level? Some days I have all

> the energy to do my things, then other days, I can't even wake up,

or

> see clearly or function. I'm having trouble with my bones where

they

> stiffen up on their own and twist at times. My left knee hurts me

at

> all times. My doctor said that its because my potassium is being

> depleted from my bones because of my diuretics, so now I am taking

> potassium pills, they have helped some, but I fear that there may

be

> more to it.

>

> I was diagnosed with IGAN in Nov 2000, but I have had it since my

> pregnancy with my son, now six. In Nov, my protein was 3.3, to

> months later, after starting medication, it had gone up to 3.5.

How

> bad is that? I will have another 24 hour test in a couple of weeks

> and I am scared to find out the results, for I have not felt better

> since the treatments began, but don't know how effective its been.

[Guest guest]

I thought I might have already responded to you. The side effects to

Prednisone that I have had are:

hair growth on face

left leg problems (like the leg won't fully extend, almost gone since

dosing down)

increased hunger (has subsided with dosing down)

fatigue (more so on days when I don't take the Prednisone, subsides

and then occurs again each time I dose down)

I also had high protein in the 3000+ range. After 3 months on

Prednisone, I was at 317/mg day.

Your doctor should have told you to take a calcium supplement while

you are on the prednisone. That's the first thing my doctor told

me. In fact, he told me to take 3 tums every day. You may lose bone

density if you are not getting enough calcium. I suggest, if you

have not already, that you read up on the side effects of long-term

prednisone use. He monitors my potassium through blood work.

It is a miracle drug though. On the Today show this morning in their

Medical Breakthrough segment, they had a story of an 83 year old man

that lost his sense of smell and taste. He took prednisone and got

his senses back. Although, he lost them again, he was able to take

another course of prednisone, and it helped. I thought that was

interesting.

If you would like to talk more, then please email me.

> I am new to this group. I posted a message on 5/7/01 to try to get

> an answer in regards to a bad reaction I had while taking the

> prednisone medication and wondered if anyone else had had such an

> experience, but I haven't heard anything. Please read message

#2040.

>

> I wonder, at what point is IGAN considered accute or chronic? Does

> anyone have trouble with their energy level? Some days I have all

> the energy to do my things, then other days, I can't even wake up,

or

> see clearly or function. I'm having trouble with my bones where

they

> stiffen up on their own and twist at times. My left knee hurts me

at

> all times. My doctor said that its because my potassium is being

> depleted from my bones because of my diuretics, so now I am taking

> potassium pills, they have helped some, but I fear that there may

be

> more to it.

>

> I was diagnosed with IGAN in Nov 2000, but I have had it since my

> pregnancy with my son, now six. In Nov, my protein was 3.3, to

> months later, after starting medication, it had gone up to 3.5.

How

> bad is that? I will have another 24 hour test in a couple of weeks

> and I am scared to find out the results, for I have not felt better

> since the treatments began, but don't know how effective its been.

[Guest guest]

I also wanted to add that I have developed sterioid acne while dosing

down. And my cholesterol rose to 275. Man, is there anything

else?!!! My face was already a little chunky, so it's not like

anyone would notice a little more puffiness! Fortunately, I have not

gained any weight even though at times I have eaten like a horse. I

think the prednisone somehow increased my metabolism.

Your doctor really did not do you well because he should have also

told you from the beginning to stay away from sugar because

prednisone causes diabetes. He should have told you to exercise. He

should have told you a lot of things. Where do you live because I

have a neph that will tell you what you need to know in order to

survive prednisone? He won't go overboard and scare you. Most of

that I do myself by gettng on the internet.

> I really hate taking the prednisone. I started at a dosage of 80mg

per day

> for two months. Gradually it has been reduced at a rate of 5mg per

month.

> But I have experienced many reactions since, not just the emotional

problems,

> but physically.

> I have gained an enormous amount of weight, not to leave out that

my face,

> well, it's not my face anymore, it's so swelled up, some friends

didn't even

> recognize me!

> I hope that eventually, but soon enough, I can find a way to better

cope with

> this disease and what it has done to me.

> Thanks for your response,

> Enid

[Guest guest]

One more question about the prednisone. If you are going to have a

reaction (side-effect), how long before you know?? Will you start

gaining weight and having hte aches right away?

Also, could whole body muscle aches be due to teh prednisone or would

that be more likely due to one of the other drugs (i.e. statin, ACE)?

Thanks,

Ingrid

[Guest guest]

I had side effects right away. Prednisone does not make you gain

weight itself. It gives you a hunger like you would not believe. I

could eat a horse sometimes. You have to control yourself.

> One more question about the prednisone. If you are going to have a

> reaction (side-effect), how long before you know?? Will you start

> gaining weight and having hte aches right away?

>

> Also, could whole body muscle aches be due to teh prednisone or

would

> that be more likely due to one of the other drugs (i.e. statin,

ACE)?

>

> Thanks,

>

> Ingrid

[Guest guest]

I suspect your original question about the bad reaction to steroids didn't

draw any replies because nobody else in the group has had such a reaction.

It must be pretty rare.

It's not really the deposition of IgA antibodies that is chronic or acute.

Technically, it's the glomerulonephritis that results from it.

Glomerulonephritis is inflammation of the glomeruli. Some people are first

diagnosed with an acute gn, while others never have an acute one, just a

slowly-developing chronic case. Theoretically, an acute gn has a fairly

rapid onset, and then it goes away. Chronic is when it persists more or less

permanently, and chronic renal failure gets worse over time. In practice

though, I think there is considerable overlap, with some people having acute

gn flare-ups on top of the less acute chronic gn they already have, and with

IgAN, most of the time, an initial acute gn simmers down after a while and

become a chronic gn (sometimes with the occasional acute flare-up, because

the cause, those IgA deposits, cannot be eliminated).

For more detailed info about acute vs chronic gn, check out the Merck Manual

at:

http://www.merck.com/pubs/mmanual/section17/chapter224/224b.htm

Your protein level of 3.5, if it is in grams per day, is at the level that

is considered " nephrotic syndrome " . Now, that doesn't necessarily mean that

you are actually experiencing the symptoms of nephrotic syndrome, but you

probably have some of them. Nephrotic syndrome can cause its own problems,

which is why it is treated with prednisone. The prednisone treats the

nephrotic syndrome in this case, not the actual underlying IgAN that caused

it in the first place. For info on nephrotic syndrome, see:

http://www.merck.com/pubs/mmanual/section17/chapter224/224c.htm

It's important to understand that these are not separate diseases. In our

cases, because we have IgA nephropathy, as diagnosed by biopsy, we know that

there is a predominant amount of immunoglobulin A antibody complexes being

deposited in our glomeruli (often, along with lesser amounts of IgG and

IgM). This in turn can cause varying degrees of glomerulonephritis (or

nephritic syndrome, and this can be either acute or chronic, or both),

glomerulosclerosis (permanent scarring of parts of the glomeruli), and in

some cases, nephrotic syndrome (which sometimes can be controlled with

prednisone). These syndromes are common to just about all kidney diseases,

not just IgAN. Some people get just some aspects of the disease, some get

the whole works.

Calcium, not potassium, is what is depleted from bones in more advanced,

chronic IgAN (keeping in mind that the closer one gets to end-stage renal

disease -- ESRD, the less it is IgAN, and the more it is pre-ESRD). They use

the term ESRD because by the time the kidneys are that bad, it doesn't

matter what the original disease was, since it all looks pretty much the

same in the kidneys. For example, if, for some reason, a person with

advanced chronic renal failure came to the attention of a doctor and had

never been diagnosed before, it might not be possible to distinguish what

the original kidney disease was.

Diuretics do cause some extra loss of potassium, along with a lot of other

minerals, but it's not a matter of bones. The level of potassium in the

blood has to be within a certain range for the heart to beat properly.

If you are in nephrotic syndrome, that can certainly affect your energy

levels. Also, the more renal failure a person had, the more energy levels

are affected. Of course, some of the medications we take also affect energy

levels, so, sometimes, it's hard to tell what is causing what.

The whole situation with IgA nephropathy and what symptoms a person might

have is further complicated by the fact that, according to many experts,

IgAN may just be a subset of the disease HSP (in other words, HSP with only

the renal manifestation and not the other symptoms), and you might have

varying degrees of some symptoms of HSP (which include, among other things,

joint pain).

I hope that helps to answer some of your questions.

Pierre

I Need Answers

> I am new to this group. I posted a message on 5/7/01 to try to get

> an answer in regards to a bad reaction I had while taking the

> prednisone medication and wondered if anyone else had had such an

> experience, but I haven't heard anything. Please read message #2040.

>

> I wonder, at what point is IGAN considered accute or chronic? Does

> anyone have trouble with their energy level? Some days I have all

> the energy to do my things, then other days, I can't even wake up, or

> see clearly or function. I'm having trouble with my bones where they

> stiffen up on their own and twist at times. My left knee hurts me at

> all times. My doctor said that its because my potassium is being

> depleted from my bones because of my diuretics, so now I am taking

> potassium pills, they have helped some, but I fear that there may be

> more to it.

>

> I was diagnosed with IGAN in Nov 2000, but I have had it since my

> pregnancy with my son, now six. In Nov, my protein was 3.3, to

> months later, after starting medication, it had gone up to 3.5. How

> bad is that? I will have another 24 hour test in a couple of weeks

> and I am scared to find out the results, for I have not felt better

> since the treatments began, but don't know how effective its been.

>

>

>

>

[Guest guest]

Here's a couple of web sites that may be helpful about HSP.

http://www.emedicine.com/emerg/topic845.htm

http://www.focusonarthritis.com/script/main/art.asp?articlekey=389

The first one is in point form, good for quick reference (specifically

mentions knee pain).

The connection between HSP and IgAN is a theory. As always with IgAN, there

are more questions than definite answers.

Pierre

Re: I Need Answers

> In a message dated 5/10/01 10:55:08 AM Central Daylight Time,

> enidfmaldonado@... writes:

>

>

> >

>

> HSP is Henoch-Schoenlein Purpura (I'm using the English variation on the

> German spelling of the name, as I believe this problem was discovered by

> either a German or an Austrian).

>

> It's a systemic problem including both kidney and skin manifestations,

hence

> the " purpura " in the name. On biopsy, the kidney of an HSP patient looks

like

> the kidney of an IgAN patient, and this means that some scientists feel

there

> is a relation between the two disorders.

>

> If anyone can add more information, I'd be happy! I don't know that much

> about the connection.

>

> Robin s

> <A HREF= " http://www.abouttransplantation.com/ " >About Transplantation:

organ donation and transplantation</A>

>

[Guest guest]

I understand completely. I always come out from the neph reeling at this

weeks revelations, so I suppose there is only so much I can deal with at any

given time, and I assume he is used to dealing with that kind of reaction.

I write long lists of questions and then write down the answers. This time

I found out that I am not as " sick " as I thought I was. At least being

chronic gives you lots of time to find out answers and try different

therapies. If the situation continues it might be worth thinking about

trying another nephrologist, because you will be seeing that doctor for a

long time.

From: enidfmaldonado@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: I Need Answers

Date: Thu, 10 May 2001 12:00:53 EDT

Thanks, , for your input on it. I also am trying to take it one day at

a time. I feel though that I don't get enough input from my neph, and many

times when I complain about how I am feeling, even though he does explains

how the disease works the kidneys, he also tells me that its just part of

the disease, I don't always come out with a satisfying answer, and that

worries me.

_________________________________________________________________________

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

[Guest guest]

i am new to this group also. i was diagonosed with iga nepropathy in

february. i am taking 60 mg of predisone a day. i am always tired. especially

around 2:00 till 6:00 and have to take a nap. my eyes are also affected. i

can't see faar away. had them checked by eye doctor. he said it was the

predisone.in the evening i have a hard time with my energy level. can't do

much with my arms. they seem to tire if i just take a shower. hoping to get

weened off soon.

my doctor doesn't give me much information about this disease or

how to handle it. i am going for a second opinion in middle of june. hope to

learn more about this disease.

susie

[Guest guest]

i am on an ACE inhibiter, zestril. i also take 12 fish oil pills, vit. E ,

caltrate 600+ don't know if any of these help, but i'm

trying to get a handle on this disease. it't hard to explain this disease to

people because they don't understand how tired u get on the predisone. the

emotional effects of predisone make you cry at anything. i'm not a crier

normally. just would like to be a normal person again. do theses side

effects go away when you get off predisone?

susie

[Guest guest]

Maybe you should talk to your doctor about taking prednisone every

other day. That cuts down on the side effects. I would never agree

to take it every day at that high dose level. Also, make sure you

are taking your doses at least 8 to 12 hours apart. I take mine 12

hours apart. Any sooner seems to lead to more problems.

> i am on an ACE inhibiter, zestril. i also take 12 fish oil pills,

vit. E ,

> caltrate 600+ don't know if any of these help,

but i'm

> trying to get a handle on this disease. it't hard to explain this

disease to

> people because they don't understand how tired u get on the

predisone. the

> emotional effects of predisone make you cry at anything. i'm not a

crier

> normally. just would like to be a normal person again. do theses

side

> effects go away when you get off

predisone?

> susie

[Guest guest]

Susie,

At least you didn't wait longer to join a group of people that can provide you with the support and info you will be needing, I just joined the group and I wish I would have found the site sooner. I have had many side effects from taking prednisone (80mg/day), including those you mentioned, you just kinda have to work around them, but talk to your dr about the symptoms especially if you feel overwhelmed.

About the eyes, well, it will only go away in time. You may experience foggy vision especially at night, or blurred vision during the day, I do. Just be careful if you drive!!

[Guest guest]

Hi Susie. I am fairly new also. My 8 year old son is having a renal bx to

be diagonosed with IGA on Thursday. I am glad I joined here. Everyone has

answered my questions and helped me with my fears. From what I have read

and what people have told me this disease isn't has bad as what I thought.

I am just praying everyday that my son will be ok.

Did you have a biopsy in Feb?

Indiana

>From: susca123@...

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Re: I Need Answers

>Date: Fri, 11 May 2001 11:26:37 EDT

>

>i am new to this group also. i was diagonosed with iga nepropathy in

>february. i am taking 60 mg of predisone a day. i am always tired.

>especially

>around 2:00 till 6:00 and have to take a nap. my eyes are also affected. i

>can't see faar away. had them checked by eye doctor. he said it was the

>predisone.in the evening i have a hard time with my energy level. can't do

>much with my arms. they seem to tire if i just take a shower. hoping to

>get

>weened off soon.

> my doctor doesn't give me much information about this disease

>or

>how to handle it. i am going for a second opinion in middle of june. hope

>to

>learn more about this disease.

>

>susie

_________________________________________________________________

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

[Guest guest]

Welcome to the group Susie.

A second opinion never hurts. You can learn a lot about IgAN by looking at

some of the files and bookmarks on the site. For that matter, you can just

type " iga nephropathy " in any search engine and come up with lots more. Not

everything is applicable to everyone though, but I think it's good to at

least have a good overview of what IgA nephropathy is. Are you on an ACE

inhibitor also, or just the prednisone?

Pierre

Re: I Need Answers

> i am new to this group also. i was diagonosed with iga nepropathy in

> february. i am taking 60 mg of predisone a day. i am always tired.

especially

> around 2:00 till 6:00 and have to take a nap. my eyes are also affected. i

> can't see faar away. had them checked by eye doctor. he said it was the

> predisone.in the evening i have a hard time with my energy level. can't

do

> much with my arms. they seem to tire if i just take a shower. hoping to

get

> weened off soon.

> my doctor doesn't give me much information about this disease

or

> how to handle it. i am going for a second opinion in middle of june. hope

to

> learn more about this disease.

>

susie

>

>

[Guest guest]

i had a bioposy in feb. i think the meds like predisone are worst than the

disease. so far i have been working 5 1/2 hrs a day. the next 2 weeks i'll

start working 4 hr.a day. i work at the community college so i only have 2

weeks left before school closes. i'll be off for the summer. hopefully that

will give me time to start weaning off the predisone. i wish your little boy

good luck.

susie

[Guest guest]

Welcome to the group. Prednisone is NEVER a pleasant experience, in my case. But it can help bring down proteinuria in many cases. The difference between 3.3 and 3.5 isn't that significant but I would think you would show some impronement in 12 weeks or less.

in Ga.

I Need Answers

I am new to this group. I posted a message on 5/7/01 to try to get an answer in regards to a bad reaction I had while taking the prednisone medication and wondered if anyone else had had such an experience, but I haven't heard anything. Please read message #2040.I wonder, at what point is IGAN considered accute or chronic? Does anyone have trouble with their energy level? Some days I have all the energy to do my things, then other days, I can't even wake up, or see clearly or function. I'm having trouble with my bones where they stiffen up on their own and twist at times. My left knee hurts me at all times. My doctor said that its because my potassium is being depleted from my bones because of my diuretics, so now I am taking potassium pills, they have helped some, but I fear that there may be more to it.I was diagnosed with IGAN in Nov 2000, but I have had it since my pregnancy with my son, now six. In Nov, my protein was 3.3, to months later, after starting medication, it had gone up to 3.5. How bad is that? I will have another 24 hour test in a couple of weeks and I am scared to find out the results, for I have not felt better since the treatments began, but don't know how effective its been.

[Guest guest]

-Susie, ask your doctor about every other day prednisone therapy. It

really is the best way to administer the drug. It gives your body a

day to rest and recover.

-- In iga-nephropathy@y..., susca123@a... wrote:

> i am new to this group also. i was diagonosed with iga nepropathy

in

> february. i am taking 60 mg of predisone a day. i am always tired.

especially

> around 2:00 till 6:00 and have to take a nap. my eyes are also

affected. i

> can't see faar away. had them checked by eye doctor. he said it was

the

> predisone.in the evening i have a hard time with my energy level.

can't do

> much with my arms. they seem to tire if i just take a shower.

hoping to get

> weened off

soon.

> my doctor doesn't give me much information about this

disease or

> how to handle it. i am going for a second opinion in middle of

june. hope to

> learn more about this

disease.

>

susie

[Guest guest]

Prednisone can in fact be " worse than the disease " . That's why, until fairly

recently, it was only used to bring down proteinuria that is in the

nephrotic range (greater than 3 grams/day). Using it to " treat " ordinary,

chronic, mild IgAN is a recent idea, and is the subject of current clinical

trials. One idea is to use it every other day, in order to minimise the side

effects. This is being tried in IgAN patients, and in other disease as well

that respond to steroids (like MS for example). The majority of people with

IgAN do not have nephrotic range proteinuria. Even for those people who use

prednisone, the plan is usually to use it only for a given period of time,

not permanently. Long term use of oral steroids can have many adverse

effects on the body, and few doctors would want their patients to become

steroid-dependant if it can be avoided.

Pierre

Re: I Need Answers

> i had a bioposy in feb. i think the meds like predisone are worst than the

> disease. so far i have been working 5 1/2 hrs a day. the next 2 weeks i'll

> start working 4 hr.a day. i work at the community college so i only have 2

> weeks left before school closes. i'll be off for the summer. hopefully

that

> will give me time to start weaning off the predisone. i wish your little

boy

> good luck.

> susie

>

>