Reducing Prednisone

[Guest guest]

.. Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.

Rose and all,

I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.

Tracie

[Guest guest]

Rose, I've been on pred for a year. I have not had a lot of help trying to figure out what is causing some problems i'm running into. I swell so badly at time that when I would take the diuretic at night I would lose 8lbs in 10 hrs ( I had a cardiocom scale attached to a computer at AvMed - it weighs within a 10th of pound - the ins co sent it because of the swelling) When I swell like that my breathing becomes a mess. I haven't been able to control it and thought maybe the pred was adding to it. That is why I tried tapering, I'm still swelling around 3+ pitting, but it is better since I reduced the dosage. I honestly can't figure out which is worse, and I will admit part of me is waiting for the other foot to fall with the sarcoid because i'm reducing the dose. Thanks for talking to me, I do appreciate any information you guys have. ConnieRose wrote: Connie, you need to taper your prednisone very slowly, especially if you've been on high doses or long term use. Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Prednisone Will Make You WEAK!!!Date: Thu, 11 May 2006 08:46:12 -0700 (PDT)Oh my goodness, me thinks me messed up. I hate taking prednisone, (at least I'm not on 60 mg a day anymore). But big Ike decided this week she would lower her dose of pred from 15 mg a day to 10 mg a day. (No I did not tell my doctor, the pulmonologist has been very resistant to me lowering it) I've had some peculiar reactions, but the damage it has been doing has been getting out of hand lately. You reckon I better rethink this until I go back to see him?

Connie" J. Blanchett" wrote: A few months ago I started seeing a new doctor here in Tampa, Florida. He is a Rheumatologist and I am already seeing results of some of his decisions regarding my care.During my initial visit he decided to take me off Prednisone. He said, "You have been on it a long time and it makes you very weak." And this is true. I have been on Prednisone for 10-11 years now and have grown very weak.A few weeks ago I could not open a zip-lock freezer bag, could not cut my meat with a knife, could not open my medicine bottles and could not hold a glass of juice with one hand. But since I have started reducing my dosage of Prednisone my strenght in my hands have returned! My grip is strong like it used to be. I can open jars, zip

lock bags, medicine bottles and hold things with one hand again. And I think it is all due to dropping my dosage of Prednisone.Mind you, reducing the level of steroids like prednisone must be done under a doctor's care and very, very carefully to avoid any serious side effects.So, I am dropping 1 milligram per month. I have gone from 15 milligrams per day to 12 milligrams per day. Each month I will reduce my dosage by an additional milligram until I am completely off. However, my dosage of Imuran was increased to an additional 50 milligrams per day. This will help keep everything in check, so to speak while I taper off the Prednisone.I must say that I am very pleased with this outcome.Part of my physical therapy is to try and walk with my walker a few steps. Well since I have dropped my dosage I can walk twice as far as I could before. And my confidence in walking

again and getting out of the wheelchair is BLESSED!So, IF YOU ARE FEELING WEEK AND CAN'T DO THINGS YOU USED TO DO, CONSIDER THE EFFECTS THE PREDNISONE IS HAVING ON YOUR STRENGTH. TALK WITH YOUR DOCTOR AND SEE IF YOU CAN DO AS MY DOCTOR SUGGESTED.BUT KEEP IN MIND THAT THIS MUST BE DONE VERY, VERY SLOWLY. IF NOT THE BODY WITH REACT HORRIBLY TO THE WITHDRAWL OF THE DRUG. SO CHECK IT OUT MY FRIENDS. And I wish all of you well.Ron :)Love ya, truly I do. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks Tracie, you just explained the bizarre temperature shifts I've been experiencing. I will look up the archive. I appreciate the help//Connietiodaat@... wrote: . Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't

compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks Tracie, you just explained the bizarre temperature shifts I've been experiencing. I will look up the archive. I appreciate the help//Connietiodaat@... wrote: . Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't

compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

My doctor has been reducing my prednisone dosage for the past few

months. Now that I am down to 10 mg he wants to add Plaquenil. I've

done some research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Please respond...

Naa Koshie

[Guest guest]

I have been on Plaquanil for almost 6 years now, no problems, can't remember

if I had any in the beginning, I don't think so, my eyes always check out

OK, you have to get your eyes checked every 6 months, I can't remember why,

but my doctor has me coming every year now, since I've had no problems, good

luck, it really helped my breathing a lot, I was put on because I broke out

with a terrible rash whole body, they thought lupus but in the end said it

was related to Sarcoid, and has helped keep the lesion down, but really

noticed a change in my breathing. So am still taking it, one at night, and

2 in the am.

Good luck, and God bless,

Marla

Reducing Prednisone

My doctor has been reducing my prednisone dosage for the past few months.

Now that I am down to 10 mg he wants to add Plaquenil. I've done some

research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Please respond...

Naa Koshie

[Guest guest]

I have been on Plaquanil for almost 6 years now, no problems, can't remember

if I had any in the beginning, I don't think so, my eyes always check out

OK, you have to get your eyes checked every 6 months, I can't remember why,

but my doctor has me coming every year now, since I've had no problems, good

luck, it really helped my breathing a lot, I was put on because I broke out

with a terrible rash whole body, they thought lupus but in the end said it

was related to Sarcoid, and has helped keep the lesion down, but really

noticed a change in my breathing. So am still taking it, one at night, and

2 in the am.

Good luck, and God bless,

Marla

Reducing Prednisone

My doctor has been reducing my prednisone dosage for the past few months.

Now that I am down to 10 mg he wants to add Plaquenil. I've done some

research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Please respond...

Naa Koshie

[Guest guest]

I have been on Plaquanil for almost 6 years now, no problems, can't remember

if I had any in the beginning, I don't think so, my eyes always check out

OK, you have to get your eyes checked every 6 months, I can't remember why,

but my doctor has me coming every year now, since I've had no problems, good

luck, it really helped my breathing a lot, I was put on because I broke out

with a terrible rash whole body, they thought lupus but in the end said it

was related to Sarcoid, and has helped keep the lesion down, but really

noticed a change in my breathing. So am still taking it, one at night, and

2 in the am.

Good luck, and God bless,

Marla

Reducing Prednisone

My doctor has been reducing my prednisone dosage for the past few months.

Now that I am down to 10 mg he wants to add Plaquenil. I've done some

research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Please respond...

Naa Koshie

[Guest guest]

.. Now that I am down to 10 mg he wants to add Plaquenil. I've

done some research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Naa,

Plaquenil has helped my breathing alot. It's part of the triad of meds I'm on --Plaquenil, Methotrexate and Remicade. I wasn't sure how much it was helping, until they took it away--and it does make a big difference.

It's shown in trials to help the lungs, but not the other body systems as much.

As far as side effects-- I haven't had any problems with it.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

.. Now that I am down to 10 mg he wants to add Plaquenil. I've

done some research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Naa,

Plaquenil has helped my breathing alot. It's part of the triad of meds I'm on --Plaquenil, Methotrexate and Remicade. I wasn't sure how much it was helping, until they took it away--and it does make a big difference.

It's shown in trials to help the lungs, but not the other body systems as much.

As far as side effects-- I haven't had any problems with it.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Yeah, I knew that. It just escaped out one of my ears. I would've remembered eventually. Really. No joke. (I really am a nurse.)

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: reducing PrednisoneDate: Thu, 11 May 2006 20:15:01 EDT

.. Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Yeah, I knew that. It just escaped out one of my ears. I would've remembered eventually. Really. No joke. (I really am a nurse.)

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: reducing PrednisoneDate: Thu, 11 May 2006 20:15:01 EDT

.. Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Yeah, I knew that. It just escaped out one of my ears. I would've remembered eventually. Really. No joke. (I really am a nurse.)

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: reducing PrednisoneDate: Thu, 11 May 2006 20:15:01 EDT

.. Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose wrote: Yeah, I knew that. It just escaped out one of my ears. I would've remembered eventually. Really. No joke. (I really am a nurse.) Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: reducing PrednisoneDate: Thu, 11 May 2006 20:15:01 EDT . Your body becomes dependent on the Prednisone & when it's lowered too fast, you can't compensate & have awful things happen. Sorry, even though I'm a nurse I can't remember right now exactly

what happens! Hopefully, somebody else's brain still has that info. Anyway, it can be very dangerous. You really need a knowledgeable doc to help you with this.Rose and all,I have a post in the ARCHIVES that talks about lowering prednisone. What happens is that the prednisone stops your adrenals from working to produce it own "cortisol" and so you have to wean off the prednisone so that the adrenals can restart. Cortisol controls heart beat, body temperature, and so much more.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database