Re: Re: Imuran and prednisone

[Guest guest]

Thanks Babs. I have been noticing muscle aches lately, too. Not really pain, but like my legs feel sore and stiff as if I had overdone an aerobic workout or something (which I have not done in years!!). My arms are kinda stiff, too, and the back of my neck. Not all the time, just every now and then. Guess I hadn't really thought much about it, but now that you mention it -- At least I am fairly sure, though, the prednisone is making me shaky. I have taken it before tons of times but always on a 4 or 5 day taper and it never bothered me. Guess it is just because this is a much higher dose, maybe? Thanks again for all the help. I hope you are doing well these days, too. CaroBarbara wrote: Caro, I was also on both of those meds at the same time. The Pred willmake you shaky and can also cause muscle weakness. I'm not sure whyyou're experiencing the diarrhea and nausea though. I don't rememberhaving that problem with the Imuran, but we're all different in ourresponses.I will suggest to you and anyone else taking it to be vigilant in yourblood work ups. Imuran can cause liver damage and you must have itchecked faithfully. I had to stop taking it after it began to affectmy liver somewhere around the 3 year mark.Anytime you have a weight loss with a new med you should let yourDoctor know about it. It may not

be the meds, but you want to rulethem out.Thinking of you, and wishing you much luck with the meds. Hugs and prayers,Babs in TexasDX with PF due to Lupus/Scleroderma/RA 11/99>> Hi All,> > I have a question. My pulmo started me on Imuran 50 mg twice aday and prednisone 30 mg once a day and I have been on it since4-1-08. My question is that since I have been taking it, I getextremely nauseous after taking my morning dose, but usually feelsomewhat better after a small amount of food (usually eat a bowl ofRaisin Bran with about 2 tablespoons of low-fat milk (lactoseintolerant)), but it seems like everyday I take it, I am becoming morenauseous and yesterday my hands started to shake. I have not actuallyvomited, have had some

diarrhea, and no weight gain. Actually havehad weight loss of 4 pounds. Has anyone else developed any of thesesymptoms with these meds? Was just curious if I should be concerned.> > Thanks for the help. I love you all.> > Caro> > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08> Mississippi> > ---------------------------------> You rock. That's why Blockbuster's offering you one month ofBlockbuster Total Access, No Cost.>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

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Caro, My hubby has really had the shakes and the muscle deterioriation. He hasn't been nauseous but just never hungry. He has been on it since the middle of January. He has lost 30#. His face is puffy more than likely from the pred. He is trying to exercise but when he is out of kilter (today is rainy and miserably cold) he struggles to get to the bathroom. What a difference from the last 3 days eh guys? i don't know much more than that. I know the barometer really bothers him. LInda K IllinosCarolyn Wade wrote: Thanks Babs. I have been noticing muscle aches lately, too. Not really pain, but like my legs feel sore and stiff as if I had overdone an aerobic workout or something (which I have not done in years!!). My arms are kinda stiff, too, and the back of my neck. Not all the time, just every now and then. Guess I hadn't really thought much about it, but now that you mention it -- At least I am fairly sure, though, the prednisone is making me shaky. I have taken it before tons of times but always on a 4 or 5 day taper and it never bothered me. Guess it is just because this is a much higher dose, maybe? Thanks again for all the help. I hope you are doing well these days, too. CaroBarbara

<babsyphrett> wrote: Caro, I was also on both of those meds at the same time. The Pred willmake you shaky and can also cause muscle weakness. I'm not sure whyyou're experiencing the diarrhea and nausea though. I don't rememberhaving that problem with the Imuran, but we're all different in ourresponses.I will suggest to you and anyone else taking it to be vigilant in yourblood work ups. Imuran can cause liver damage and you must have itchecked faithfully. I had to stop taking it after it began to affectmy liver somewhere around the 3 year mark.Anytime you have a weight loss with a new med you should let yourDoctor know about it. It may not be the meds, but you want to rulethem out.Thinking of you, and wishing you much luck with the meds. Hugs and prayers,Babs in TexasDX with PF due to

Lupus/Scleroderma/RA 11/99>> Hi All,> > I have a question. My pulmo started me on Imuran 50 mg twice aday and prednisone 30 mg once a day and I have been on it since4-1-08. My question is that since I have been taking it, I getextremely nauseous after taking my morning dose, but usually feelsomewhat better after a small amount of food (usually eat a bowl ofRaisin Bran with about 2 tablespoons of low-fat milk (lactoseintolerant)), but it seems like everyday I take it, I am becoming morenauseous and yesterday my hands started to shake. I have not actuallyvomited, have had some diarrhea, and no weight gain. Actually havehad weight loss of 4 pounds. Has anyone else developed any of thesesymptoms with these meds? Was just curious if I

should be concerned.> > Thanks for the help. I love you all.> > Caro> > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08> Mississippi> > ---------------------------------> You rock. That's why Blockbuster's offering you one month ofBlockbuster Total Access, No Cost.>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

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Thanks Geeta. I tried to get up a little ealier this morning than I normally do. Ate may cereal with the medicine and still feel nauseous. Guess I had best call when they open at 10 a.m. Thanks for the help. CaroGita Vasudev wrote: carolyn ,I had nausea and palpitations with immuran and was passing red urine it was stopped at once at that time I was on 40mg prednisone but after immuran was dropped the side effects stopped , you have to

ask your doctorGeeta> Hi All,> > I have a question. My pulmo started me on Imuran 50 mg twice a day and prednisone 30 mg once a day and I have been on it since 4-1-08. My question is that since I have been taking it, I get extremely nauseous after taking my morning dose, but usually

feel somewhat better after a small amount of food (usually eat a bowl of Raisin Bran with about 2 tablespoons of low-fat milk (lactose intolerant)), but it seems like everyday I take it, I am becoming more nauseous and yesterday my hands started to shake. I have not actually vomited, have had some diarrhea, and no weight gain. Actually have had weight loss of 4 pounds. Has anyone else developed any of these symptoms with these meds? Was just curious if I should be concerned.> > Thanks for the help. I love you all.> > Caro> > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi > ---------------------------------> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > > > > >

---------------------------------> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

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OMG!! It tastes absolutely horrible!!! It is so bitter!!! The first time I took it with a sip of coffee and that was even worse!! It melted on my tongue and I started gagging!! Since then I take it with a glass of water and try to swallow it as quickly as possible, but it is still NASTY!!!! YUKKO!!! Carolsmith7892006 wrote: Hi Caro!My doc also says take the Prednisone before 9 in the morning. It has something to do with the way

the body produces cortisol naturally or something. I'm sure I don't understand BUT the prednisone does make me shaky and nauseated at that dosage. It also leaves a bad taste sometimes.Good luck. S, Lubbock, TXNSIP w/PF 12/2006> > > Hi All,> > > > I have a question. My pulmo started me on Imuran 50 mg twice a day > > and prednisone 30 mg once a day and I have been on it since 4-1-08. > > My question is that since I have been taking it, I get extremely > > nauseous after taking my morning dose, but usually feel somewhat > > better after a small amount of food (usually eat a bowl of Raisin Bran > > with about 2 tablespoons of low-fat milk (lactose intolerant)), but it > > seems like everyday I take it, I am becoming more nauseous and > > yesterday my hands started to shake. I have not

actually vomited, > > have had some diarrhea, and no weight gain. Actually have had weight > > loss of 4 pounds. Has anyone else developed any of these symptoms > > with these meds? Was just curious if I should be concerned.> > > > Thanks for the help. I love you all.> > > > Caro> >> >> > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> >> > ----------------------------------------------------------------> > You rock. That's why Blockbuster's offering you one month of > > Blockbuster Total Access > > <http://us.rd.yahoo.com/evt=47523/*http://tc.deals.yahoo.com/tc/blockbuster/text5.com>, > > No Cost.> > > >> >---------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG. > >Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM> > > >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

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Am due for blood work on 4-30, but have an appointment on 4-16 to see Internal Medicine (who just happens to be my pulmo's wife and they are in the same office). I am hoping between the two of them, I can get some pretty good healthcare (if I can just get them to STAY IN THE COUNTRY!!) LOL!! CaroJoyce wrote: Caro, They should be tracking the Imuran with

bloodwork. I would guess that Prednisone is the culprit. I know it causes shakiness and trembling. 30mg is a big enough dose to have lots of side effects. I go over the edge at 20mg....which is where I am right now. Prednisone causes different side effects in different people. A strange drug! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hi All,> > I have a question. My pulmo started me on Imuran 50 mg twice a day and prednisone 30 mg once a day and I have been on it since 4-1-08. My question is that since I have been taking it, I get extremely nauseous after taking my morning dose, but usually feel somewhat better after a small amount of food (usually eat a bowl of Raisin Bran with about 2 tablespoons of low-fat milk (lactose intolerant)), but it seems like everyday I take it, I am becoming more nauseous and yesterday my hands started to shake. I have not actually vomited, have had some diarrhea, and no weight gain. Actually have had weight loss of 4 pounds. Has anyone else developed any of these symptoms with these meds? Was just curious if I should be concerned.> > Thanks for the help. I love you all.> > Caro> > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF

08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> > ---------------------------------> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________Do You

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I have had that not feeling hungry thing, too. I go in the kitchen, open up the fridge, and just stand there looking and then close the door. It rained a few days ago, and I felt absolutely horrible. Caro Kennelly wrote: Caro, My hubby has really had the shakes and the muscle deterioriation. He hasn't been nauseous but just never hungry. He has been on it since the middle of January. He has lost 30#. His

face is puffy more than likely from the pred. He is trying to exercise but when he is out of kilter (today is rainy and miserably cold) he struggles to get to the bathroom. What a difference from the last 3 days eh guys? i don't know much more than that. I know the barometer really bothers him. LInda K IllinosCarolyn Wade <carowade4444> wrote: Thanks Babs. I have been noticing muscle aches lately, too. Not really pain, but like my legs feel sore and stiff as if I had overdone an aerobic workout or something (which I have not done in years!!). My arms are kinda stiff, too, and the back of my neck. Not all the time, just every now and then. Guess I hadn't really thought much about it, but now that you mention it -- At least I am

fairly sure, though, the prednisone is making me shaky. I have taken it before tons of times but always on a 4 or 5 day taper and it never bothered me. Guess it is just because this is a much higher dose, maybe? Thanks again for all the help. I hope you are doing well these days, too. CaroBarbara <babsyphrett> wrote: Caro, I was also on both of those meds at the same time. The Pred willmake you shaky and can also cause muscle weakness. I'm not sure whyyou're experiencing the diarrhea and nausea though. I don't rememberhaving that problem with the Imuran, but we're all different in ourresponses.I will suggest to you and anyone else taking it to be vigilant in yourblood work ups. Imuran can cause liver damage and you must have

itchecked faithfully. I had to stop taking it after it began to affectmy liver somewhere around the 3 year mark.Anytime you have a weight loss with a new med you should let yourDoctor know about it. It may not be the meds, but you want to rulethem out.Thinking of you, and wishing you much luck with the meds. Hugs and prayers,Babs in TexasDX with PF due to Lupus/Scleroderma/RA 11/99>> Hi All,> > I have a question. My pulmo started me on Imuran 50 mg twice aday and prednisone 30 mg once a day and I have been on it since4-1-08. My question is that since I have been taking it, I getextremely nauseous after taking my morning dose, but usually feelsomewhat better after a small amount of food (usually eat a bowl ofRaisin Bran with

about 2 tablespoons of low-fat milk (lactoseintolerant)), but it seems like everyday I take it, I am becoming morenauseous and yesterday my hands started to shake. I have not actuallyvomited, have had some diarrhea, and no weight gain. Actually havehad weight loss of 4 pounds. Has anyone else developed any of thesesymptoms with these meds? Was just curious if I should be concerned.> > Thanks for the help. I love you all.> > Caro> > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08> Mississippi> > ---------------------------------> You rock. That's why Blockbuster's offering you one month ofBlockbuster Total Access, No Cost.>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID

ARTHRITIS 03/08Mississippi You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

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This definitely comes under the heading of "splittin' hairs", but FOR ME, I found that my tongue has more taste receptors towards the back of my mouth than it does in the middle. I say this because in an effort to avoid the awful taste I'd been trying to throw the pills into the back of my mouth.....get them down faster.....never worked. By accident I discovered that I could simply place them on my tongue in about the middle and swallow them with minimal taste....................Funny......all these years I never mentioned this to anyone, thinking it was information that most folks simply didn't care about. I guess it is just one more aspect of this business that we all share............ jim IPF 05 alaska Carolyn Wade wrote: OMG!! It tastes absolutely horrible!!! It is so bitter!!! The first time I took it with a sip of coffee and that was even worse!! It melted on my tongue and I started gagging!! Since then I take it with a glass of water and try to swallow it as quickly as possible, but it is still NASTY!!!! YUKKO!!! Carolsmith7892006 <lbsmith789sbcglobal (DOT) net> wrote: Hi Caro!My doc also

says take the Prednisone before 9 in the morning. It has something to do with the way the body produces cortisol naturally or something. I'm sure I don't understand BUT the prednisone does make me shaky and nauseated at that dosage. It also leaves a bad taste sometimes.Good luck. S, Lubbock, TXNSIP w/PF 12/2006> > > Hi All,> > > > I have a question. My pulmo started me on Imuran 50 mg twice a day > > and prednisone 30 mg once a day and I have been on it since 4-1-08. > > My question is that since I have been taking it, I get extremely > > nauseous after taking my morning dose, but usually feel somewhat > > better after a small amount of food (usually eat a bowl of Raisin Bran > > with about 2 tablespoons of low-fat milk (lactose intolerant)), but it > > seems like everyday I take it,

I am becoming more nauseous and > > yesterday my hands started to shake. I have not actually vomited, > > have had some diarrhea, and no weight gain. Actually have had weight > > loss of 4 pounds. Has anyone else developed any of these symptoms > > with these meds? Was just curious if I should be concerned.> > > > Thanks for the help. I love you all.> > > > Caro> >> >> > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> >> > ----------------------------------------------------------------> > You rock. That's why Blockbuster's offering you one month of > > Blockbuster Total Access > > <http://us.rd.yahoo.com/evt=47523/*http://tc.deals.yahoo.com/tc/blockbuster/text5.com>, > > No Cost.> > > >> >---------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG. > >Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM> > > >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

HMMMM!! Middle of tongue, Aye? I will have to try that. I have been trying the throw it down your throat thing, too, and it didn't work, either. Still tastes horrible. Maybe if I try and stick it in the middle of a brownie!! That is funny, cuz my daughter cannot swallow pills and she is 27 now and takes her birth control pills folded inside a Little Debbie brownie!! Carojames wallman wrote: This definitely comes under the heading of "splittin' hairs", but FOR ME, I found that my tongue has more taste receptors towards the back of my mouth than it does in the middle. I say this because in an effort to avoid the awful taste I'd been trying to throw the pills into the back of my mouth.....get them down faster.....never worked. By accident I discovered that I could simply place them on my tongue in about the middle and swallow them with minimal taste....................Funny......all these years I never mentioned this to anyone, thinking it was information that most folks simply didn't care about. I guess it is just one more aspect of this business that we all share............ jim IPF 05 alaska Carolyn Wade <carowade4444> wrote: OMG!! It tastes absolutely horrible!!! It is so bitter!!! The first time I took it with a sip of coffee and that was even worse!! It melted on my tongue and I started gagging!! Since then I take it with a glass of water and try to swallow it as quickly as possible, but it is still NASTY!!!! YUKKO!!! Carolsmith7892006 <lbsmith789sbcglobal (DOT) net> wrote: Hi Caro!My doc also says take the Prednisone before 9 in the morning. It has something to do with the way the body produces cortisol naturally or something. I'm sure I don't understand BUT the prednisone does make me shaky and

nauseated at that dosage. It also leaves a bad taste sometimes.Good luck. S, Lubbock, TXNSIP w/PF 12/2006> > > Hi All,> > > > I have a question. My pulmo started me on Imuran 50 mg twice a day > > and prednisone 30 mg once a day and I have been on it since 4-1-08. > > My question is that since I have been taking it, I get extremely > > nauseous after taking my morning dose, but usually feel somewhat > > better after a small amount of food (usually eat a bowl of Raisin Bran > > with about 2 tablespoons of low-fat milk (lactose intolerant)), but it > > seems like everyday I take it, I am becoming more nauseous and > > yesterday my hands started to shake. I have not actually vomited, > > have had some diarrhea, and no weight gain. Actually have had weight > >

loss of 4 pounds. Has anyone else developed any of these symptoms > > with these meds? Was just curious if I should be concerned.> > > > Thanks for the help. I love you all.> > > > Caro> >> >> > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> >> > ----------------------------------------------------------------> > You rock. That's why Blockbuster's offering you one month of > > Blockbuster Total Access > > <http://us.rd.yahoo.com/evt=47523/*http://tc.deals.yahoo.com/tc/blockbuster/text5.com>, > > No Cost.> > > >>

>---------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG. > >Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM> > > >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever".............. jim IPF 05 alaska a wrote: YOU can take you off it (with tapering advice of course !!!!!!) GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> >

Vicky81856> > > > > ---------------------------------> Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

Jim from Alaska, I also have been on

Prednisone since my DX..that will be three years in August!!!

I've gone from 40 mg to now 11.25!

My pulmonologist has said that I will most likely get to 10mg but no

less!!!

So, I too will be taking this horrid stuff forever.

But to paraphrase Beth and others...I'm stable and I'll take

stability!!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s

too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and

MomMom to

Darah

and Sara

“I’m

gonna

be iron like a lion in Zion” Bob Marley

james wallman wrote:

I've been on prednisone for over 2 years. Maximum dose has been

30mg. The MDs have been trying to get me off of it for 2 and a half

years. I get down to 5mg and the symptoms return. They've tried lots of

different gradual schedules.....now I'm back up to 10.....for a

month.....then to 9 for a month, etc. 1mg at a time.......we'll

see. I think I'm stuck with the stuff for the duration so it's like

"whatever"..............

jim IPF 05

alaska

a <gina.francisbigpond> wrote:

YOU can take you off it (with tapering

advice of course !!!!!!)

GIO

> when I was on steroids, i was on 30mg and had the shakes all the

time, I think that's the cause for your shaky hands.

>

> Vicky81856

>

>

>

>

> ---------------------------------

> Planning your summer road trip? Check out AOL Travel Guides.

>

>

>

>

>

> Caro

> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08

> Mississippi

> __________________________________________________

>

[Guest guest]

,

It's all so interesting isn't it? I mean how our bodies behave or misbehave for that matter. I was on very high doses of prednisone (up to 100mg) for about 9 months till I weaned completely in February of 07. At the time it was started, I was in hospital and extremely ill. I had gotten tremendously worse very suddenly. ( I was at work on Friday and by Monday was in the ICU and they were telling my family my condition was 'very tenous') There is no doubt in my mind that without the prednisone, I wouldn't be here today. My side effects were there but I was fortunate in that I had a doctor who helped me manage them aggressively.But what amazes the doctors now is that I've been off the prednisone entirely for 14 months and I've stayed stable. I understand why people choose to avoid the prednisone but if I begin to deteriorate, based on my first experience I won't hesitate for an instant to use it again. But in the meantime I'm happy taking

nothing but the Nexium for reflux and the Advair inhaler to control the cough. Oh and of course the lovely hose in the nose! Can't forget that!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Imuran and prednisone

Dear Sista,

It's wonderful that you & MB ARE stable but what intrigues me is that so am I, even though I haven't been taking the 80 mg Prednisone & Imuran etc that the Brisbane Lung Transplant man wanted me to go on last October.

It's a conundrum isn't it... if I had taken all that nasty stuff I would be hailing it as the cause of my stability but HEY I'm stable anyway (or at least it FEELS that way!) I'm due for PFT's in May ...I'll be interested to see what my diffusion rate is compared to my last one of 49% .

I know I'm a lot fitter than I was this time last year! I haven't been taking anything except Adalat for the Reynaud's. (Oh & Choccies & Stone's Green Ginger ... & Drambuie !!!!!)

lotsa lurve,

GIO

PS I love hearing the latest on your grandbubby.. ...

> > > when I was on steroids, i was on 30mg and had the shakes all the> > time, I think that's the cause for your shaky hands.> > >> > > Vicky81856> > >> > >> > >> > >> > > ------------ --------- ---------

---> > > Planning your summer road trip? Check out AOL Travel Guides.> > >> > >> > >> > >> > >> > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> > 01/08, RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > > ____________ _________ _________ _________ _________ __> > >

[Guest guest]

I am glad to hear this MB!! Maybe I will be fortunate enough one day to get off this prednisone. After only 2 weeks, it is not agreeing with me at all at only 30 mg a day. Caro Beth wrote: , It's all so interesting isn't it? I mean how our bodies behave or misbehave for that matter. I was on very high doses of prednisone (up to 100mg) for about 9 months till I

weaned completely in February of 07. At the time it was started, I was in hospital and extremely ill. I had gotten tremendously worse very suddenly. ( I was at work on Friday and by Monday was in the ICU and they were telling my family my condition was 'very tenous') There is no doubt in my mind that without the prednisone, I wouldn't be here today. My side effects were there but I was fortunate in that I had a doctor who helped me manage them aggressively.But what amazes the doctors now is that I've been off the prednisone entirely for 14 months and I've stayed stable. I understand why people choose to avoid the prednisone but if I begin to deteriorate, based on my first experience I won't hesitate for an instant to use it again. But in the meantime I'm happy taking nothing but the Nexium for reflux and the Advair inhaler to control the cough. Oh and of course the lovely hose in the nose! Can't forget that! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Imuran and prednisone Dear Sista, It's wonderful that you & MB ARE stable but what intrigues me is that so am I, even though I haven't been taking the 80 mg Prednisone & Imuran etc that the Brisbane Lung Transplant

man wanted me to go on last October. It's a conundrum isn't it... if I had taken all that nasty stuff I would be hailing it as the cause of my stability but HEY I'm stable anyway (or at least it FEELS that way!) I'm due for PFT's in May ...I'll be interested to see what my diffusion rate is compared to my last one of 49% . I know I'm a lot fitter than I was this time last year! I haven't been taking anything except Adalat for the Reynaud's. (Oh & Choccies & Stone's Green Ginger ... & Drambuie !!!!!) lotsa lurve, GIO PS I love hearing the latest on your grandbubby.. ... > > > when I was on steroids, i was on 30mg and had the shakes all the> > time, I think that's the cause for your shaky hands.> > >> > > Vicky81856> > >> >

>> > >> > >> > > ------------ --------- --------- ---> > > Planning your summer road trip? Check out AOL Travel Guides.> > >> > >> > >> > >> > >> > > Caro> > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> > 01/08, RHEUMATOID ARTHRITIS 03/08> > > Mississippi> > > ____________ _________ _________ _________ _________ __> > >

[Guest guest]

HERE!! HERE!! Caro Zion wrote: Jim from Alaska, I also have been on Prednisone since my DX..that will be three years in August!!!I've gone from 40 mg to now 11.25!My pulmonologist has said that I will most likely get to 10mg but no less!!!So, I too will be taking this horrid stuff forever.But to paraphrase Beth and others...I'm stable and I'll take stability!!! Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->james wallman wrote: I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever".............. jim IPF 05 alaska a <gina.francisbigpond> wrote: YOU can take you off it (with tapering advice of course !!!!!!) GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.>

> Vicky81856> > > > > ---------------------------------> Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

Hi ,

I am finally down to 10 and I think I won't be able to go lower. On 10 my cough is back. How are you doing at the 11? Any coughing? I am just curious.

Sarcoid/PF 3/2006 California

Re: Re: Imuran and prednisone

Jim from Alaska, I also have been on Prednisone since my DX..that will be three years in August!!!I've gone from 40 mg to now 11.25!My pulmonologist has said that I will most likely get to 10mg but no less!!!So, I too will be taking this horrid stuff forever.But to paraphrase Beth and others...I'm stable and I'll take stability!!!

Z fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

james wallman wrote:

I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules... ..now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we' ll see. I think I'm stuck with the stuff for the duration so it's like "whatever".. ......... ...

jim IPF 05

alaska

a <gina.francis@ bigpond.com> wrote:

YOU can take you off it (with tapering advice of course !!!!!!)

GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> > Vicky81856> > > > > ------------ --------- --------- ---> Planning your summer road trip? Check out AOL Travel

Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> ____________ _________ _________ _________ _________ __>

[Guest guest]

I just called the pulmo's office regarding the nausea and hands shaking and diarrhea with the prednisone and Imuran. I am so nauseous this morning, I couldn't even get a bite of cereal in without gagging. Dumped the cereal down the garbage disposal and called the office. Waiting for the nurse to call me back. I like such a WUSS!! Carojames wallman wrote: I've been on prednisone for over 2 years. Maximum dose has been 30mg. The

MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever".............. jim IPF 05 alaska a <gina.francisbigpond> wrote: YOU can take you off it (with tapering advice of course !!!!!!) GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> > Vicky81856> > > > > ---------------------------------> Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi>

__________________________________________________>

[Guest guest]

OOPS!! -- I meant, I FEEL LIKE SUCH A WUSS!!" CaroCarolyn Wade wrote: I just called the pulmo's office regarding the nausea and hands shaking and diarrhea with the prednisone and Imuran. I am so nauseous this morning, I couldn't even get a bite of cereal in without gagging. Dumped the cereal down the garbage disposal and called the office. Waiting for the nurse to call me back. I like such a WUSS!! Carojames wallman <james_wallman> wrote: I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever".............. jim IPF 05 alaska a <gina.francisbigpond> wrote: YOU can take you

off it (with tapering advice of course !!!!!!) GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> > Vicky81856> > > > > --------------------------------->

Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

Caro....I'm sorry you feel like a wuss...hey, that's big time meds you are on. My pulmonologist and I agreed not to put me on Imuran because the side effects can be harsh for some people. My age (70 this year) plays a part too. I'm glad you called right away. This is probably not an unusual complaint!

Hang on........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Re: Imuran and prednisone

OOPS!! -- I meant, I FEEL LIKE SUCH A WUSS!!"

CaroCarolyn Wade <carowade4444> wrote:

I just called the pulmo's office regarding the nausea and hands shaking and diarrhea with the prednisone and Imuran. I am so nauseous this morning, I couldn't even get a bite of cereal in without gagging. Dumped the cereal down the garbage disposal and called the office. Waiting for the nurse to call me back. I like such a WUSS!!

Carojames wallman <james_wallman> wrote:

I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever"..............

jim IPF 05

alaska

a <gina.francisbigpond> wrote:

YOU can take you off it (with tapering advice of course !!!!!!)

GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> > Vicky81856> > > > > ---------------------------------> Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

Thanks Sher. I am trying. CaroSher Bauman wrote: Caro....I'm sorry you feel like a wuss...hey, that's big time meds you are on. My pulmonologist and I agreed not to put me on Imuran because the side effects can be harsh for some people. My age (70 this year) plays a part too. I'm glad you called right away. This is probably not an unusual complaint! Hang

on........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Re: Imuran and prednisone OOPS!! -- I meant, I FEEL LIKE SUCH A WUSS!!" CaroCarolyn Wade <carowade4444> wrote: I just called the pulmo's office regarding the nausea and hands shaking and diarrhea with the prednisone and Imuran. I am so nauseous this morning, I couldn't even get a bite of cereal in without gagging. Dumped the cereal down the garbage disposal and called the office. Waiting for the nurse to call me back. I like such a WUSS!! Carojames wallman <james_wallman> wrote: I've been on prednisone for over 2 years. Maximum dose has been 30mg. The MDs have been trying to get me off of it for 2 and a half years. I get down to 5mg and

the symptoms return. They've tried lots of different gradual schedules.....now I'm back up to 10.....for a month.....then to 9 for a month, etc. 1mg at a time.......we'll see. I think I'm stuck with the stuff for the duration so it's like "whatever".............. jim IPF 05 alaska a <gina.francisbigpond> wrote: YOU can take you off it (with tapering advice of course !!!!!!) GIO> when I was on steroids, i was on 30mg and had the shakes all the time, I think that's the cause for your shaky hands.> > Vicky81856> > > > > ---------------------------------> Planning your summer road trip? Check out AOL Travel Guides.> > > > > > Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08> Mississippi> __________________________________________________>

[Guest guest]

,  My coughing has not been an issue

for many months!

I have NSIP. When I did have a cough at the beginning it was a dry

hacking continuous cough..totally non-productive.

The dr. said that my form of PF did not have the "yucky" stuff

as the standard PF!

I only cough now if I really over-do the activity , talking , or the

weather gets really cold and windy.

Hot and humid will make me cough too!

I'm at 11.25mg and so-far-so-good!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s

too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and

MomMom to

Darah

and Sara 

    

“I’m

gonna

be iron like a lion in Zion”  Bob Marley

 

 

denise randel wrote:

Hi ,

   I am finally down to 10 and I think I won't be able to go

lower.   On 10 my cough is back.  How are you doing at the 11?  Any

coughing?  I am just curious. 

 

  

Sarcoid/PF  3/2006   California

-----

Original Message ----

From: Zion <ljz741verizon (DOT) net>

To: Breathe-Support

Sent: Wednesday, April 9, 2008 8:34:05 PM

Subject: Re: Re: Imuran and prednisone

Jim from Alaska,  I also have been on

Prednisone since my DX..that will be three years in August!!!

I've gone from 40 mg to now 11.25!

My pulmonologist has said that I will most likely get to 10mg but no

less!!!

So, I too will be taking this horrid stuff forever.

But to paraphrase Beth and others...I'm stable and I'll take

stability!!!

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah

and Sara 

    

“I’m gonna be

iron like a lion in Zion”  Bob Marley

 

 

james wallman wrote:

I've been on prednisone  for over 2 years. Maximum dose has

been 30mg. The MDs have been trying to get me off of it for 2 and a

half years. I get down to 5mg and the symptoms return. They've tried

lots of different gradual schedules... ..now I'm back up to 10.....for

a month.....then to 9 for a month, etc. 1mg at a time.......we' ll see.

I think I'm stuck with the stuff for the duration so it's like

"whatever".. ......... ...

 

jim IPF 05

alaska

 

 

a <gina.francis@ bigpond.com> wrote:

YOU can take you off it (with tapering

advice of course !!!!!!)

GIO

> when I was on steroids, i was on 30mg and had the shakes all the

time, I think that's the cause for your shaky hands.

>

> Vicky81856

>

>

>

>

> ------------ --------- --------- ---

> Planning your summer road trip? Check out AOL Travel Guides.

>

>

>

>

>

> Caro

> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08

> Mississippi

> ____________ _________ _________ _________ _________ __

>