Re: Re: Question azathioprine

[Guest guest]

Sorry to respond so slowly, the reasoning from my pulmonologist to do it every other day is that in the past I have had severe reactions from Prednisone. As when my face first swelled I thought it was from the prednisone. but it is getting to large right now... also get this hump and mental change so, they are also checking me now for cortitsol levels... This is also one reason he wants me in with Dr. Ragu soon as this pulmonologist does not feel comfortable putting me on higher levels of prednisone. Now, I have a real problem with not able to take Azathioprine and just only small doses of prednisone..My body is very reactive to medications and chemicals. The list of allergies is endless when I go to a doctor. I know at least the UWMC must have all the information still I hope… As that is where I was treated at the time.. for cushing's disease. Erna

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

To: Breathe-Support Sent: Sun, January 10, 2010 2:13:45 PMSubject: Re: Question azathioprine

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>> Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have

been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last

week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD

& MI 2004> ILD 2008 NSIP 2009> Washington State> Â>

[Guest guest]

Erna, My sister had Cushings disease. I remember how swollen up she got. Way worse than Prednisone. She lived here in Idaho but she had to go to Seattle for radiation treatments on the tumor that caused it. My doctor here thought I might have it once after I had a surgery. Thank God, I didn't. If anyone grabbed her arms they would break open and bleed and leave scars.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Re: Question azathioprineTo: Breathe-Support Date: Sunday, January 10, 2010, 2:45 PM

Sorry to respond so slowly, the reasoning from my pulmonologist to do it every other day is that in the past I have had severe reactions from Prednisone. As when my face first swelled I thought it was from the prednisone. but it is getting to large right now... also get this hump and mental change so, they are also checking me now for cortitsol levels... This is also one reason he wants me in with Dr. Ragu soon as this pulmonologist does not feel comfortable putting me on higher levels of prednisone. Now, I have a real problem with not able to take Azathioprine and just only small doses of prednisone.. My body is very reactive to medications and chemicals. The list of allergies is endless when I go to a doctor. I know at least

the UWMC must have all the information still I hope… As that is where I was treated at the time.. for cushing's disease. Erna

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

http://endocrine. niddk.nih. gov/pubs/ cushings/ cushings. htm

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 10, 2010 2:13:45 PMSubject: Re: Question azathioprine

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>> Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has anyone had problems with Azathioprine, I

was put on azathioprine aweek and a half ago and I have

been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last

week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD

& MI 2004> ILD 2008 NSIP 2009> Washington State> Â>

[Guest guest]

Erna, Cushings

syndrome is one of the major side-effects of Prednisone use.

It goes away when you get off of the Prednisone.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

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 Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Erna wrote:

 

Sorry to respond so slowly, the reasoning from my pulmonologist to do

it every other day is that in the past I have had severe reactions from

Prednisone. As when my face first swelled I thought it was from the

prednisone. but it is getting to large right now... also  get this hump

and mental change so,  they are also checking me now for cortitsol

levels... This is also one reason he wants me in with Dr. Ragu soon as

this pulmonologist does not feel comfortable putting me on higher

levels of prednisone. Now, I have a real problem with not able to take Azathioprine

and just only small doses of prednisone..My body is very reactive

to medications and chemicals. The list of allergies is endless when I

go to a doctor. I know at least the UWMC must have all the information

still I hope… As that is where I was treated at the time.. for

cushing's disease. Erna

 

Cushing’s

syndrome occurs when the body’s tissues are exposed to high levels of

cortisol for too long. Many people develop Cushing’s syndrome because

they take glucocorticoids—steroid hormones that are chemically similar

to naturally produced cortisol—such as prednisone for asthma,

rheumatoid arthritis, lupus, and other inflammatory diseases.

Glucocorticoids are also used to suppress the immune system after

transplantation to keep the body from rejecting the new organ or

tissue.

http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm

 

1992

bird fanciers syndrome, CAD

& MI 2004 , ILD 2008 NSIP

2009

Washington

State

 

From:

Bruce <brucemoreland (AT) gmail (DOT) com>

To: Breathe-Support

Sent: Sun, January 10,

2010 2:13:45 PM

Subject:

Re: Question azathioprine

 

When they are reducing prednisone, some doctors do go from 10 mg to 10

mg every other day, rather than to 5 mg. Some go to 5 and then to 5

every other day. So the practice is not unusual.

>

> Erna,

> I agree with MB, you should go to ER and definitely stop the

medication. I don't understand your prescription for

Prednisone.. ..taking it every other day? Why is that? Why not daily?

> Â

> C_53_Familial IPF_5/09, Washington

> HOPEÂ doesn't disappoint!

>

>

>

>

>

> ____________ _________ _________ __

> From: Beth mbmurtha@...

> To: Breathe-Support@

yahoogroups. com

> Sent: Sun, January 10, 2010 4:26:28 AM

> Subject: Re: Question azathioprine

>

> Â

> Erna,

> Swelling of lips and tongue is a very serious side effect, in fact

it

could be an allergic reaction. You need to seek emergency help. Get to

the ER immediately.

>

> Â

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> Â

> Â

>

>

>

>

> ____________ _________ _________ __

> From: Erna vrolijk50 (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sun, January 10, 2010 4:46:10 AM

> Subject: Question azathioprine

>

> Â

> Hi, AllÂ

> Has anyone had problems with Azathioprine, I was put on

azathioprine a

week and a half ago and I have been having muscle pain and been very

tired also. Between all my meetings andpulmonology rehab I am not able

to do anything… the only thing I may have gotten accomplished when

I could not make my meeting my partner did. My representative who was at

this meeting and I had hoped to meet. My partner was able to talk to him

when explained why I was not there and he then was able to ask

him about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. He

right away went on the phone started to work on it…so that was my

excitement of the day.

> Â but now

> The pulmonologist who used to go to in Bellingham and also uses

same

treatments Doctor Ragu I guess he worked together with him. Has a

complete different picture of what I have from the biopsy report. The

other pulmonologist who is mostly a lung cancer pulmonologist just gave

me 5 mg of prednisone every other day.Â

> When I went last week to my, pulmonologist he wanted me to go right

away to Doctor Ragu and was somewhat worried that the appointment was

not until the 5th of may.Â

> He said we could not wait any longer, I had to go on azathioprine

50

milligrams and up it every other week to 300 mg then do 10 mg prednisone

every other day. I have been sleeping all day through this meeting but

now my face is getting swollen, lips and tongue…My belly is

enlarged I usually have flat belly and itching but no rashes.

> I quickly looked at side effects and it is a side effect I guess

but

it dangerous can I wait until Monday.? Or will I wait for my blood test

on Wednesday. I have no clue I guess I will go to bed again and see if

someone will respond tomorrow.

> I hate going to the emergency room or should I just quit taking it?

Thank you for your help, Erna

>

> Â

> Erna

> 1992 bird fanciers syndrome,

> CAD & MI 2004

> ILD 2008 NSIP 2009

> Washington State

> Â

>

[Guest guest]

Hi, Beverly Joy

It must have been real hard to see this in your sister this way. I cannot imagine how hard it must have been for all of you. I was bad off but not that bad… I was 300 pounds and did not even hardly eat... my skin was full of bruises but they did not break... the most difficult thing to deal with where the mental issues that they had to hospitalized me for also.... but of prednisone I am totally normal (what ever normal is(lol) and140 pounds. My cardiologist says my heart could not handle it either.... So, I am stuck on low doses of prednisone.. And still have troubles with cordisol already.

he problem is what are they going to give for the fibrosis in my lungs. My pulmonologist is hoping for pirfenidone soon...He also is going to try for a sooner appointment with Dr. Ragu.

He does not seem to think I have cellular NSIP at all and at least fibrotic NSIP, he even thinks I sarcoidosis also. Because I have non necrotizing granulomas. Bruce explained how each doctor once in a post has its own way of diagnosing. It was very helpful. But the pulmonologist in Virginia Mason did not want me to go to Dr. Ragu. And never explained the biopsy report to me before and now I have the information myself. I went back to my old pulmonologist (who could not get the biopsy done because my cardiologist did not want him to do a VATS because of the

Plavix issue. While the Pulmonologist in Bellingham had all the blood work and CT scans. He made his diagnosis from all three of this information gathered together. But still wants input from Dr, Ragu. I just cannot understad why he did not send me in the first place over there... but hen the Cardiologist wanted a second opion and made an appoinment with the on at the VM. wow, this tired me out I better take another nap.... my canulas I need to stick in my mouth..(lol) because of my swollen face. and the benedril makes me real sleepy, Erna

1992 bird fanciers syndrome,CAD & MI 2004, ILD 2008 NSIP 2009

Washington State

To: Breathe-Support Sent: Sun, January 10, 2010 4:03:51 PMSubject: Re: Re: Question azathioprine

Erna, My sister had Cushings disease. I remember how swollen up she got. Way worse than Prednisone. She lived here in Idaho but she had to go to Seattle for radiation treatments on the tumor that caused it. My doctor here thought I might have it once after I had a surgery. Thank God, I didn't. If anyone grabbed her arms they would break open and bleed and leave scars.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Erna <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: Re: Question azathioprineTo: Breathe-Support@ yahoogroups. comDate: Sunday, January 10, 2010, 2:45 PM

Sorry to respond so slowly, the reasoning from my pulmonologist to do it every other day is that in the past I have had severe reactions from Prednisone. As when my face first swelled I thought it was from the prednisone. but it is getting to large right now... also get this hump and mental change so, they are also checking me now for cortitsol levels... This is also one reason he wants me in with Dr. Ragu soon as this pulmonologist does not feel comfortable putting me on higher levels of prednisone. Now, I have a real problem with not able to take Azathioprine and just only small doses of prednisone.. My body is very reactive to medications and chemicals. The list of allergies is endless when I go to a doctor. I know at least the

UWMC must have all the information still I hope… As that is where I was treated at the time.. for cushing's disease. Erna

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

http://endocrine. niddk.nih. gov/pubs/ cushings/ cushings. htm

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 10, 2010 2:13:45 PMSubject: Re: Question azathioprine

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>>

Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my

partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on

azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State>

Â>

[Guest guest]

Yes, I know Cushings syndrome is one of the major side-effects of Prednisone. The problem is some people have to get off predisone because the side effect is to much agitated and having hallucinations, my sugar is going through the roof while I have normall low blood sugar. My heart disease is also a factor in this problem. it is not like i have 'Cushingoid' features" I get on predisone the full blown Cushings disease .. The pulmonlogist kow it... I think that is why they dropped the ball on bird fanciers syndrome and it got worse an worse... eventhough I was not exposed. Erna

1992 bird fanciers syndrome, CAD & MI 2004 ,ILD 2008 NSIP 2009

Washington State

To: Breathe-Support Sent: Sun, January 10, 2010 4:41:43 PMSubject: Re: Re: Question azathioprine

Erna, Cushings syndrome is one of the major side-effects of Prednisone use.It goes away when you get off of the Prednisone.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

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

Vinca Minor-periwinkle is my flower

Erna wrote:

Sorry to respond so slowly, the reasoning from my pulmonologist to do it every other day is that in the past I have had severe reactions from Prednisone. As when my face first swelled I thought it was from the prednisone. but it is getting to large right now... also get this hump and mental change so, they are also checking me now for cortitsol levels... This is also one reason he wants me in with Dr. Ragu soon as this pulmonologist does not feel comfortable putting me on higher levels of prednisone. Now, I have a real problem with not able to take Azathioprine and just only small doses of prednisone.. My body is very reactive to medications and chemicals. The list of allergies is endless when I go to a doctor. I know at least the

UWMC must have all the information still I hope… As that is where I was treated at the time.. for cushing's disease. Erna

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

http://endocrine. niddk.nih. gov/pubs/ cushings/ cushings. htm

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 10, 2010 2:13:45 PMSubject: Re: Question azathioprine

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>> Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have

been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last

week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD

& MI 2004> ILD 2008 NSIP 2009> Washington State> Â>

[Guest guest]

Hi, Bruce

Sorry I just saw your note, as you saw I did call and am drowsy from the Benadryl right now..

It also is very hard to keep up with all the answers there are so many of them. I write everything out in word to make sure I do not make mistakes and people do not understand me. So it is a little harder to write back.

Yes, I knew about the blood reactionsI have a request to do these blood tests: Complete blood count (CBC or FBC)

Liver function tests. For some reason I was more worried about the prednisone and did not read all the other reactions.

The doctor on call said they were very rare. I am getting a little scared right now, since they cannot put me on the high doses of prednisone and now this with azathioprine. How am I going to get stop the fibroses and the inflammation and not getting worse. If I cannot take doses they want to give me. The pulmonlgist wanted me on 300 of azathioprine with 10 mg each other day so my body would keep up its own adrenal supply. Actually, I have since 12 years ago in my charts that I am allergic to all cortisone medications. Even my Pharmacist could not figure out how they could put me on cortisone medications now. I know there are other medications but they even sound worse. I could not handle another

cushioning reaction; it took me almost five years to get over it without any prednisone a all. Yes, I am real scared that they cannot do anything for me. But I should wait until tomorrow and call my pulmonologist. Take the blood test and so on….. and sleep

Thank you, Erna

Erna

1992 bird fanciers syndrome, CAD & MI 2004 ,ILD 2008 NSIP 2009

Washington State

To: Breathe-Support Sent: Sun, January 10, 2010 7:59:45 AMSubject: Re: Question azathioprine

ErnaPeople do have reactions to Azathioprine and thats why you start withvery frequent blood testing. If you've been on it a week and half youalready should have had your first blood test but if your doctor has anemergency number I'd dial it. At the worst, I'd not take any today andget to the doctor first thing tomorrow.>> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was

atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it

every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State>

[Guest guest]

jerry was on 5 mgs every other day prior to being weaned off of prednisone entirely

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Question azathioprineTo: Breathe-Support Date: Sunday, January 10, 2010, 5:13 PM

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>> Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has

anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a

lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank

you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State> Â>

[Guest guest]

jerry was on 5 mgs every other day prior to being weaned off of prednisone entirely

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Question azathioprineTo: Breathe-Support Date: Sunday, January 10, 2010, 5:13 PM

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>> Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has

anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a

lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank

you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State> Â>

[Guest guest]

Talking about Cushings disease and Prednisone reminds me that I was looking pretty close to the way my sister did.I hope you can get in to see Dr. Raghu soon. I feel a lot better since I went there.How is your swelling? That is frightening.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Erna <vrolijk50 (AT) yahoo (DOT) com>Subject: Re: Re: Question azathioprineTo: Breathe-Support@ yahoogroups. comDate: Sunday, January 10, 2010, 2:45 PM

Sorry to respond so slowly, the reasoning from my pulmonologist to do it every other day is that in the past I have had severe reactions from Prednisone. As when my face first swelled I thought it was from the prednisone. but it is getting to large right now... also get this hump and mental change so, they are also checking me now for cortitsol levels... This is also one reason he wants me in with Dr. Ragu soon as this pulmonologist does not feel comfortable putting me on higher levels of prednisone. Now, I have a real problem with not able to take Azathioprine and just only small doses of prednisone.. My body is very reactive to medications and chemicals. The list of allergies is endless when I go to a doctor. I know at least the

UWMC must have all the information still I hope… As that is where I was treated at the time.. for cushing's disease. Erna

Cushing’s syndrome occurs when the body’s tissues are exposed to high levels of cortisol for too long. Many people develop Cushing’s syndrome because they take glucocorticoids—steroid hormones that are chemically similar to naturally produced cortisol—such as prednisone for asthma, rheumatoid arthritis, lupus, and other inflammatory diseases. Glucocorticoids are also used to suppress the immune system after transplantation to keep the body from rejecting the new organ or tissue.

http://endocrine. niddk.nih. gov/pubs/ cushings/ cushings. htm

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 10, 2010 2:13:45 PMSubject: Re: Question azathioprine

When they are reducing prednisone, some doctors do go from 10 mg to 10mg every other day, rather than to 5 mg. Some go to 5 and then to 5every other day. So the practice is not unusual.>> Erna,> I agree with MB, you should go to ER and definitely stop themedication. I don't understand your prescription forPrednisone.. ..taking it every other day? Why is that? Why not daily?> Â> C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:26:28 AM> Subject: Re: Question azathioprine>>

Â> Erna,> Swelling of lips and tongue is a very serious side effect, in fact itcould be an allergic reaction. You need to seek emergency help. Get tothe ER immediately.>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________ _________ _________ __> From: Erna vrolijk50 (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 10, 2010 4:46:10 AM> Subject: Question azathioprine>> Â> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my

partner did. My representative who was atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on

azathioprine 50milligrams and up it every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State>

Â>

[Guest guest]

Erna,

I am on 100mg of Azathioprine and have monthly blood tests. No known side affects.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 11, 2010 4:07:59 AMSubject: Re: Re: Question azathioprine

Erna,

When it comes to the azathioprine the regular bloodwork has to include liver function tests and not just a cbc. Azathioprine can adversely affect the normal functioning of the liver and that needs to be checked on frequently when taking this med.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Erna <vrolijk50 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 11, 2010 2:14:02 AMSubject: Re: Re: Question azathioprine

Hi, Bruce

Sorry I just saw your note, as you saw I did call and am drowsy from the Benadryl right now..

It also is very hard to keep up with all the answers there are so many of them. I write everything out in word to make sure I do not make mistakes and people do not understand me. So it is a little harder to write back.

Yes, I knew about the blood reactionsI have a request to do these blood tests: Complete blood count (CBC or FBC)

Liver function tests. For some reason I was more worried about the prednisone and did not read all the other reactions.

The doctor on call said they were very rare. I am getting a little scared right now, since they cannot put me on the high doses of prednisone and now this with azathioprine. How am I going to get stop the fibroses and the inflammation and not getting worse. If I cannot take doses they want to give me. The pulmonlgist wanted me on 300 of azathioprine with 10 mg each other day so my body would keep up its own adrenal supply. Actually, I have since 12 years ago in my charts that I am allergic to all cortisone medications. Even my Pharmacist could not figure out how they could put me on cortisone medications now. I know there are other medications but they even sound worse. I could not handle another cushioning reaction; it took me almost five years to get over it without any prednisone a all. Yes, I am real scared that they cannot do

anything for me. But I should wait until tomorrow and call my pulmonologist. Take the blood test and so on….. and sleep

Thank you, Erna

Erna

1992 bird fanciers syndrome, CAD & MI 2004 ,ILD 2008 NSIP 2009

Washington State

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 10, 2010 7:59:45 AMSubject: Re: Question azathioprine

ErnaPeople do have reactions to Azathioprine and thats why you start withvery frequent blood testing. If you've been on it a week and half youalready should have had your first blood test but if your doctor has anemergency number I'd dial it. At the worst, I'd not take any today andget to the doctor first thing tomorrow.>> Hi, AllÂ> Has anyone had problems with Azathioprine, I was put on azathioprine aweek and a half ago and I have been having muscle pain and been verytired also. Between all my meetings andpulmonology rehab I am not ableto do anything… the only thing I may have gotten accomplished whenI could not make my meeting my partner did. My representative who was

atthis meeting and I had hoped to meet. My partner was able to talk to himwhen explained why I was not there and he then was able to askhim about to join in Brain Baird to co sponsor The PFREA, H.R. 1079. Heright away went on the phone started to work on it…so that was myexcitement of the day.>  but now> The pulmonologist who used to go to in Bellingham and also uses sametreatments Doctor Ragu I guess he worked together with him. Has acomplete different picture of what I have from the biopsy report. Theother pulmonologist who is mostly a lung cancer pulmonologist just gaveme 5 mg of prednisone every other day.Â> When I went last week to my, pulmonologist he wanted me to go rightaway to Doctor Ragu and was somewhat worried that the appointment wasnot until the 5th of may.Â> He said we could not wait any longer, I had to go on azathioprine 50milligrams and up it

every other week to 300 mg then do 10 mg prednisoneevery other day. I have been sleeping all day through this meeting butnow my face is getting swollen, lips and tongue…My belly isenlarged I usually have flat belly and itching but no rashes.> I quickly looked at side effects and it is a side effect I guess butit dangerous can I wait until Monday.? Or will I wait for my blood teston Wednesday. I have no clue I guess I will go to bed again and see ifsomeone will respond tomorrow.> I hate going to the emergency room or should I just quit taking it?Thank you for your help, Erna>> Â> Erna> 1992 bird fanciers syndrome,> CAD & MI 2004> ILD 2008 NSIP 2009> Washington State>