Re: Prednisone

[Guest guest]

Know what you mean . I have been upgraded from the registrar to the

neph, and he has given me a name for Australia. Unfortunately when I get

there I will have to go through the whole thing again - register with a GP,

get a referral, get an appointment, etc. Still I suppose at least I will get

a second opinion on the treatment plan though hopefully not a second biopsy!

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[Guest guest]

I was wondering if those of you on prednisone experience total "black outs" in which you can't remember anything.

This is actually a common side effect of pred. I wasn't on pred until after I was transplanted, but even at the dosages used by your husband, there is generally significant memory loss. I know I had it at that dosage level (they started me out on about 100 mg pred, back in the days before cyclo).

Robin s

About Transplantation: organ donation and transplantation

[Guest guest]

, I had been taking high dosages of prednisone (80mg/day), now at 45mg/day. I thought at times that I was losing it. I had memory problems before, but I think it just got worse afterward, things that I shouldv'e been able to remember I didn't. I had a job that was very detail oriented and nerving (I think it had alot to do with the people too) and I found myself making many errors. Well, that didn't go well, but I seriously believe that the medication had a lot to do with my inability to concentrate and remember easily, but of course, that was my experience, I don't know if others may also feel the same.

Enid

[Guest guest]

The mental effects of prednisone, for me, are far worse than the "wonderful" physical side effects. Memory loss and lapses, inability to focus, and the mood swings can wreak havoc upon one's life. Vision problems and eye irritation have been my worse physical effects this course of steroids. The alternate day therapy is much easier on the body but in my case was not as effective as everyday doses have been. I have been on 125mg ADT and on as much as 60md daily and am currently down to 10mg day. The decision to wean off this stuff was mine as my proteinuria is down to 1 gr/ day and I simply can't take it anymore. Thus far into IgAN the "cure" has been worse than the disease.

in GA

prednisone

Hi everyone! I was wondering if those of you on prednisone experience total "black outs" in which you can't remember anything. My husband is on 50mg every other day. Don't know if his problems are from meds or due to depression/denial. All I know is that things are not going well mentally. Any insight would be helpful. R. in South Boston

[Guest guest]

,

I am sorry to hear that you've encountered the mental effects of the prednisone, but it puts me a little more at ease with the situation we are in. Now I know that we are not alone. Most people have said that I need to be understanding (which I have been), but dealing with someone who has been completely irrational 90% of the time has been really hard. He hit rock bottom this weekend and now my husband has agreed to see the doctor to have the meds lowered and possibly get into counseling( I had contacted the doctor about 2 weeks ago with concerns about his actions and he wanted to see him right away, but Alan refused to go) Who would have thought that side effects could be as devastating as they have been! R. in South Boston

[Guest guest]

i agree totally diane, our dr. told us right off the bat that

prednisone does nothing for ipf..it's just the ''drug of choice''

because the dr's dont know what else to do. he left the choice up to

us, but after investigating the side effects,, we siad HECK NO.. and

the dr. said whew! .. lol so far, jon hasnt had any of the side

effects from the actimune, which we are thankful,, but we dont know if

it is working or not either,, hopefully the dr will run tests again

here soon , so we can do a comparrison.. it has been about 4 months now

on the drug..

hope all are having a great weekend......God Bless.......

teri,,jon ipf 5/06

[Guest guest]

hi teri,

is jon's actimune a clinical trial? i was just on the website and i see that they are conducting trials with the drug to treat ipf

anne (dad ipf 03/06)

.. Re: Prednisone

i agree totally diane, our dr. told us right off the bat that prednisone does nothing for ipf..it's just the ''drug of choice'' because the dr's dont know what else to do. he left the choice up to us, but after investigating the side effects,, we siad HECK NO.. and the dr. said whew! .. lol so far, jon hasnt had any of the side effects from the actimune, which we are thankful,, but we dont know if it is working or not either,, hopefully the dr will run tests again here soon , so we can do a comparrison.. it has been about 4 months now on the drug.. hope all are having a great weekend......God Bless.......teri,,jon ipf 5/06

[Guest guest]

Hi Tere. My doc put me on 80 mg last Apr. ... saying that there was no other choice in drug. When I weaned myself off - he said that was fine...we would wait until my next appt in Nov to see if it made a diff to be off of it. Joy 3/06Teri wrote: i agree totally diane, our dr. told us right off the bat that prednisone does nothing for ipf..it's just the ''drug of choice'' because the dr's dont know what else to do. he left the choice up to us, but after investigating the side

effects,, we siad HECK NO.. and the dr. said whew! .. lol so far, jon hasnt had any of the side effects from the actimune, which we are thankful,, but we dont know if it is working or not either,, hopefully the dr will run tests again here soon , so we can do a comparrison.. it has been about 4 months now on the drug.. hope all are having a great weekend......God Bless.......teri,,jon ipf 5/06 Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

[Guest guest]

Hi Teri

I was dx March 2006. Doc prescribed 10 mgs. prednisone. After about 1-

2 weeks, noticed big improvement--less SOB, less tired, less coughing.

So far the side effects have been minimal. I really believe the

Prednisone reduced the inflammation.

Joyce IPF 3/06

>

> i agree totally diane, our dr. told us right off the bat that

> prednisone does nothing for ipf..it's just the ''drug of choice''

> because the dr's dont know what else to do. he left the choice up to

> us, but after investigating the side effects,, we siad HECK NO.. and

> the dr. said whew! .. lol so far, jon hasnt had any of the side

> effects from the actimune, which we are thankful,, but we dont know

if

> it is working or not either,, hopefully the dr will run tests again

> here soon , so we can do a comparrison.. it has been about 4 months

now

> on the drug..

> hope all are having a great weekend......God Bless.......

> teri,,jon ipf 5/06

>

[Guest guest]

>

> Hi Teri

> I was dx March 2006. Doc prescribed 10 mgs. prednisone. After about

1-

> 2 weeks, noticed big improvement--less SOB, less tired, less coughing.

> So far the side effects have been minimal. I really believe the

> Prednisone reduced the inflammation.

> Joyce IPF 3/06

> *****************************************************************

> hi joyce,,, there are so many different views out there, that is what

is so bad with this disease,, no one reacts the same . some have great

results with prednisone, others wouldnt give it to their worst enemy.

our dr. just said that it helps the inflamtion, and for us.. jon didnt

have inflamation, so why risk taking it? i am glad it has helped you,

i hope it continues to, and with little side effects. i pray for all of

you who have this horrible monster. teri ...jon ipf 5*06

[Guest guest]

Hi Leanne and Laurie, I am down to 5 mg every other day and doing great! My side effects were the worst when I went from 40 to 30 and then 30 to 20. I think I was moving down too fast-now I am taking it realll slowww! I am still puffy, have 30 pounds to lose and on the lower dose I am having trouble sleeping ( I am writing this at 2:30 am). The horrible night sweats stopped at around 15 mg and so did the bone pain and outrageous hunger. My breathing has actually gotten better ( I am up to 60% lung volume) and my o2 is staying in the high 90's. I still have to be really careful to pace myself or my o2 levels drop quickly and I start having chest pain again. Only other weird symptom is that I keep "losing" words. I mean to say one word and another comes out of my mouth ( I must say this is the scariest side effect so far) My conclusion is: Prednisone works for some people just like chemo cures some from cancer. Unfortunately, just like chemo, for some of us the cure is worse than the disease. After 4 months of prednisone my grand total of side effects are: Bone loss on my spine Diabetes High Blood Pressure Cushing's Disease Excessive weight gain Blurry vision Joint and bone pain Facial hair Mood swings That said, I am still glad I tried it. I would have always wondered if I would have been one of the lucky ones who benefitted from it. But I am very, very glad to be getting off of it. I feel more like myself and am not so depressed ( and my food bill has been cut in half!) Also, just wanted to let everyone know I am busy, busy, busy packing up my house (my wonderful daughter has been here for the past two weeks and my sons have all pitched in) I can't

believe how much junk I've accumulated over the years and what a pack rat I've become. I am having a huge garage sale this week and then making myself get rid of most of it. I won't be online much till it's all over in a few weeks. God bless all of you and know you are in my prayers daily even if I'm not online- PF/Sarcoidosis 3/06 Leanne Storch wrote: Hi Laurie, I can attest to the prednisone weaning Hell. I was on

60 mgs to begin. Tapered to 20 mgs - was on 20 mgs for about a year. Weaned very slowly. Sometimes you wean down a mg at a time. The aches and pains were bad. The breathing was worse. You feel like you have the flu all the time. But, I knew there was a light at the end of the tunnel. I wanted to be off the drug so I put up with the side affects. Peggy is right. It's like heroin. Your body has to start producing cortisol again. It's not happy about it. A nurse friend of mine told me that when you get down below 7.5 mgs is when it's the toughest because our body produces that much. My doctor wanted me off too. He didn't feel that I was getting any benefit from it at all. I feel it actually set me back a bit. I started on 2 liters of oxygen and after I weaned off prednisone I went up to 4 liters and now I'm on 5 on exertion. My personal opinion is that prednisone stressed

my body out. I still have to take a NSAID (non-steriodal anti-inflammatory drug) because of the arthritic like pain I still experience two years later. Hopefully will share her story because she's weaning off prednisone and will be joining the weaning group. Ginger had a heck of a time too. But, once you are over the hump, you do start to feel better and I'm VERY glad that I don't have to take it any more. Plus 20 lbs I gained did fall off after a month or so. (I gained a total of 30 - still working on the 10 ) Please keep in mind this is my personal story and my personal experience. Everyone is different. Prednisone is the best of drugs and the worst of drugs. It sounds like the doctor is weaning your husband nice and slow. It's good to hear

that he will be monitored too. How long has he been on 40 mgs? Leanne ipf 1/03l e <rmje3> wrote: Hi Everyone: I am interested to hear from anyone that has been weaned off prednisone how much at a time and how long before they lowered it again. My husband is on 40 per day and they they weaned him to 35 for 3 weeks then it will be another 5 then he sees the dr. again. The side effects are a nightmare. Thank you,Laurie Do you Yahoo!?Get on board. You're invited to try the new Yahoo! Mail. Yahoo! Messenger with

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