Off Prednisone

[Guest guest]

Hi group. I just wanted to inform you that I have been off prednisone

for about two weeks. So far so good. No headaches and not really any

pain. I don't know how long that will last but I am enjoying it for

now. I am no longer having the stomach pains from prednisone and for

once I am feeling ok. I just pray that things keep going that way. I

was pretty bad off before with eyesight problems, headaches, stomach

problems, and rashes on my leg. But truly this is the first in a long

time I have felt this good. I wean off the prednisone the last two

weeks of 2006 and lets hope that I can stay off for a while. I wish

all of you at least a day without pain because I know how it is to

wake up each morning with something just not feeling right. It feels

good to have a somewhat normal day even though I am not physically as

strong as I would like to be. Keep fighting and never give up even

when it seems like you can't make it.

your friend,

Shauna in alt.

[Guest guest]

how long were you on prednisone and at what doses?sglaspie2000 wrote: Hi group. I just wanted to inform you that I have been off prednisone for about two weeks. So far so good. No headaches and not really any pain. I don't know how long that will last but I am enjoying it for now. I am no longer having the stomach pains from prednisone and for once I am feeling ok. I just pray that things keep going that way. I was pretty bad off before with eyesight problems, headaches, stomach

problems, and rashes on my leg. But truly this is the first in a long time I have felt this good. I wean off the prednisone the last two weeks of 2006 and lets hope that I can stay off for a while. I wish all of you at least a day without pain because I know how it is to wake up each morning with something just not feeling right. It feels good to have a somewhat normal day even though I am not physically as strong as I would like to be. Keep fighting and never give up even when it seems like you can't make it. your friend,Shauna in alt.NOTICE: This electronic mail transmission is not intended for transmission to, or

receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without copying it, and notify the sender by reply e-mail. __________________________________________________

[Guest guest]

Shauna,

Glad to hear the news. Are you on other medications that is allowing you to eliminate the prednisone? I have been on perdnisone since August 1996 I have never been able to get lower then 15 mg without bad reactions. If I go below 12 I end up in the hospital with in two to three weeks. Please let us know if there are other drugs involved that are providing you relief and keeping your neurosarcoidosis in check. I have tried them all without any success.

As you are probably aware, to my knowledge neurosarcoidosis does not go into remission. And if it has for you that would be my first incounter of someone who has gone into remission and wean themselves off of prednisone without other drugs. If you have accomplished this, I would like to know how?

Warm regards,

Bob Casper

Off Prednisone

Hi group. I just wanted to inform you that I have been off prednisone for about two weeks. So far so good. No headaches and not really any pain. I don't know how long that will last but I am enjoying it for now. I am no longer having the stomach pains from prednisone and for once I am feeling ok. I just pray that things keep going that way. I was pretty bad off before with eyesight problems, headaches, stomach problems, and rashes on my leg. But truly this is the first in a long time I have felt this good. I wean off the prednisone the last two weeks of 2006 and lets hope that I can stay off for a while. I wish all of you at least a day without pain because I know how it is to wake up each morning with something just not feeling right. It feels good to have a somewhat normal day even though I am not physically as strong as I would like to be. Keep fighting and never give up even when it seems like you can't make it.

your friend,Shauna in alt.

[Guest guest]

Hi Bob. Like you I have been on prednisone on and off since 2000,

continuously since 2004. Whenever I went below 15 or 20 mg I would

begin to get symptoms and if they were ignored and I went down to 0 I

would get really sick, end up in hospital and spend 6-9 months

recuperating. I just started Remicade and my symptoms are fading away.

I began a faster prednisone taper with the hopes that no flare-ups

will occur. I will let you know how things go. For now I am a real

Remicade enthusiast!

-

[Guest guest]

,

Is your insurance paying for the remicade? Unfortunately remicade did not work for me. It was costing my insurance company $6,000 an infusion. Because I was not seeing progress I did not want the company to continue to spend that amount on treatments that were not working.

Thank you for your quick response.

Warm regards,

Bob Casper

Re: Off Prednisone

Hi Bob. Like you I have been on prednisone on and off since 2000,continuously since 2004. Whenever I went below 15 or 20 mg I wouldbegin to get symptoms and if they were ignored and I went down to 0 Iwould get really sick, end up in hospital and spend 6-9 monthsrecuperating. I just started Remicade and my symptoms are fading away.I began a faster prednisone taper with the hopes that no flare-upswill occur. I will let you know how things go. For now I am a realRemicade enthusiast!-