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dolly,

Haldol seem to work for daddy when he would become

aggitated and confused. We could give him up to 15

tablets a day, although we never had to do that. We

found that the afternoons were his worse time so we

would give him 2 around afternoon time and it eventually

went away and he didn't need them any more, we

tried lots of pills but this was our salvation.

Moons

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From: Hard2Breathe4Me

Sent: Wednesday, May 20, 2009 11:16 PM

To: Breathe-Support

Subject: MEDICATION

Jodee,

I am just a newbie so remember that when you read my reply. All the others know way more but this is my experience. I have been on 10mg of pred for four years and have never had any side effects other than about a 40-50 pound weight gain over those years but then again I love ice cream so I might have gained it anyway. I have always heard what a horrible drug it was and about the terrible side effects. Before last week I really did believe that pred was underrated. I have auto immune diseases and it does help keep my muscle and joint pain somewhat in check so I can't go off it ever until they come up something new for me. And I do believe the reason my IPF did not get worse faster over the two years it took them to diagnose me is because of the pred. That said, after suffering through pred withdrawals due to a mix up between my doc and pharmacy last week I am of an advocate of everyone being taken off the drug. Sudden, complete withdrawal from prednisone was unlike anything I have suffered through and I pray I never have to go through it again. To say the very least, it was incredible awful. So now rather than being an advocate for Prednisone I have changed my position and think that anyone who can live as a good quality of life on something different should get off prednisone as soon as they can be stepped down. Anything that has that much impact on your body when taken away must be having a huge impact on your body when you're on it. That can not be a good thing. That's just my opinion but I wish and pray that there was an alternative for me because I want off of it permanently.

Everyone pray for me today and think good thoughts. I am meeting the surgeon for my pre-op today at 10:30am to discuss fixing my hiatal hernia and my stomach so hopefully I don't aspirate any more. Since going on 24 hour O2 I have felt loads better. I just have the concentrator but I have enough hose to go almost anywhere in my house. Pulmo jerk didn't think I needed daytime but he is so wrong. When I see the cardiologist I will be getting a referral to a new pulmonologist. Excited about that! The lasix seems to be working as my swelling has almost completely disappeared. I get my blood work results today and I am praying the do not show any heart involvement.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

I would like to get off the presidone but everytime I've tried my body reacts with horrible pain that even morphine won't control.

I take Cellcept also. Has anyone else had this problem? Dear informative and so knowledgable group - Is there any another medication will help be wein off the predisone. I'm going to see my doctor the first part of June and I will ask him about the medication you guys recommend. Thank you in advance.

Jodee

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From: Hard2Breathe4Me

Sent: Wednesday, May 20, 2009 11:16 PM

To: Breathe-Support

Subject: MEDICATION

Jodee,

I am just a newbie so remember that when you read my reply. All the others know way more but this is my experience. I have been on 10mg of pred for four years and have never had any side effects other than about a 40-50 pound weight gain over those years but then again I love ice cream so I might have gained it anyway. I have always heard what a horrible drug it was and about the terrible side effects. Before last week I really did believe that pred was underrated. I have auto immune diseases and it does help keep my muscle and joint pain somewhat in check so I can't go off it ever until they come up something new for me. And I do believe the reason my IPF did not get worse faster over the two years it took them to diagnose me is because of the pred. That said, after suffering through pred withdrawals due to a mix up between my doc and pharmacy last week I am of an advocate of everyone being taken off the drug. Sudden, complete withdrawal from prednisone was unlike anything I have suffered through and I pray I never have to go through it again. To say the very least, it was incredible awful. So now rather than being an advocate for Prednisone I have changed my position and think that anyone who can live as a good quality of life on something different should get off prednisone as soon as they can be stepped down. Anything that has that much impact on your body when taken away must be having a huge impact on your body when you're on it. That can not be a good thing. That's just my opinion but I wish and pray that there was an alternative for me because I want off of it permanently.

Everyone pray for me today and think good thoughts. I am meeting the surgeon for my pre-op today at 10:30am to discuss fixing my hiatal hernia and my stomach so hopefully I don't aspirate any more. Since going on 24 hour O2 I have felt loads better. I just have the concentrator but I have enough hose to go almost anywhere in my house. Pulmo jerk didn't think I needed daytime but he is so wrong. When I see the cardiologist I will be getting a referral to a new pulmonologist. Excited about that! The lasix seems to be working as my swelling has almost completely disappeared. I get my blood work results today and I am praying the do not show any heart involvement.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

I would like to get off the presidone but everytime I've tried my body reacts with horrible pain that even morphine won't control.

I take Cellcept also. Has anyone else had this problem? Dear informative and so knowledgable group - Is there any another medication will help be wein off the predisone. I'm going to see my doctor the first part of June and I will ask him about the medication you guys recommend. Thank you in advance.

Jodee

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I am on 20 mg. of predisone daily. I have been on predisone for 7 yrs. straight. The doctors have tried to reduce the dosage but as I said the pain was too bad. Maybe if I went down 1/2 mg each week it might work. I am diabetic because of the predisone and hope that will also be a thing of the past once I'm not taking steroids anymore.

Re: MEDICATION

JodeeI don't remember all your conditions or the level of prednisone you'reon. If you're on a high level, then often it can take a very long timewith slow decreases. If you're on a low level then you may well be atthe lowest dosage your body is going to tolerate. Perhaps if you couldrefresh us. Sounds like you do have connective tissue disease of somesort. Getting off prednisone sometimes just isn't the thing to do.>> I would like to get off the presidone but everytime I've tried my bodyreacts with horrible pain that even morphine won't control.>> I take Cellcept also. Has anyone else had this problem? Dearinformative and so knowledgable group - Is there any another medicationwill help be wein off the predisone. I'm going to see my doctor thefirst part of June and I will ask him about the medication you guysrecommend. Thank you in advance.> Jodee>

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I am on 20 mg. of predisone daily. I have been on predisone for 7 yrs. straight. The doctors have tried to reduce the dosage but as I said the pain was too bad. Maybe if I went down 1/2 mg each week it might work. I am diabetic because of the predisone and hope that will also be a thing of the past once I'm not taking steroids anymore.

Re: MEDICATION

JodeeI don't remember all your conditions or the level of prednisone you'reon. If you're on a high level, then often it can take a very long timewith slow decreases. If you're on a low level then you may well be atthe lowest dosage your body is going to tolerate. Perhaps if you couldrefresh us. Sounds like you do have connective tissue disease of somesort. Getting off prednisone sometimes just isn't the thing to do.>> I would like to get off the presidone but everytime I've tried my bodyreacts with horrible pain that even morphine won't control.>> I take Cellcept also. Has anyone else had this problem? Dearinformative and so knowledgable group - Is there any another medicationwill help be wein off the predisone. I'm going to see my doctor thefirst part of June and I will ask him about the medication you guysrecommend. Thank you in advance.> Jodee>

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