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PennyPA
Contributing Member

USA
5755 Posts

Posted - Feb 19 2017 :  7:23:23 PM  Show Profile  Reply with Quote
Joe, ask your pulmo why he stopped the Spiriva. Did it help you when you were taking it before? I would also ask him why he has you on such a high dosage of pred. And yes, it does compromise your immune system. It doesn't really matter for when we go on a burst of pred but for long-term usage, that dosage will affect your immune system....and your bones.

Have you had a pulmonary function test at all?

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Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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joeabby
Rookie

USA
24 Posts

Posted - Feb 19 2017 :  7:49:04 PM  Show Profile  Reply with Quote
This is a bit crazy, Penny. I know not why he stopped the Spiriva. I can't tell you whether it was helping or not. I'm not noticing any difference now that I've been off it for 2 months.
I just reviewed my pulmo's discharge summary from when I left the hospital for the rehab facility. He took me OFF Pred on 12/12. The summary was given to the rehab nurse. I didn't get it until I left rehab along with their summary. It says I was put back on Pred on 12/19 by a person whose name I can't pronounce, by phone. I have already sent my pulmo a message explaining all this.
I won't be taking any more til I hear from him. It is also listed in his list of my meds. I guess they just don't have time for details.

Gettin old ain't for wussies!
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joeabby
Rookie

USA
24 Posts

Posted - Feb 19 2017 :  7:56:54 PM  Show Profile  Reply with Quote
I missed your question. I have no idea what a pumonary function test is. The only test I know that I've done are Spirometry tests where you try to blow your brains out into a tube. It measures how much air you expel compared to what you breathe in, I think. I have results but can't interpret them.

Gettin old ain't for wussies!
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Feb 19 2017 :  9:32:05 PM  Show Profile  Reply with Quote
A pulmonary function test is like a spirometry but more complete. Takes about 45 minutes. I don't think you should stop the pred until your doc tells you HOW to stop it. I believe it may take some tapering down so don't do it yet, okay? Did whoever put you back on the pred ever see you in person? This is really sounding weird right now so wait until you get some answers from your doc before you do anything.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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joeabby
Rookie

USA
24 Posts

Posted - Feb 20 2017 :  10:30:14 AM  Show Profile  Reply with Quote
OK, Penny, I'll split the dif with you...1/2 pill today. It will be 48 hrs before I hear from my pulmo.
I read some of your blog on LVRS, amazing!!

Gettin old ain't for wussies!
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joeabby
Rookie

USA
24 Posts

Posted - Feb 21 2017 :  08:20:57 AM  Show Profile  Reply with Quote
I got word back that I'm officially off Pred, but no 'weaning' directions. So, I'll take the other half from yesterday & that'll be it.
Thanks, Penny.

Gettin old ain't for wussies!
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Feb 21 2017 :  4:25:40 PM  Show Profile  Reply with Quote
Be prepared for some really negative feelings after quitting the pred, Joe. I can't believe your doc took you from 20mgs a day to 0mgs per day. Did he know you were on 20?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Bo H
Contributing Member

USA
1118 Posts

Posted - Feb 21 2017 :  4:51:43 PM  Show Profile  Reply with Quote
Penny, The last 2 or 3 times I've been on 20MG pred for 10 days I quit without the taper. Couldn't tell the difference.

Bo in Al
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joeabby
Rookie

USA
24 Posts

Posted - Feb 21 2017 :  5:13:56 PM  Show Profile  Reply with Quote
Yes, he knew & my nurse says I probably won't notice it either. Time will tell. I do know it quelled the pain from arthritis in my hip, The DDD in my neck, & the eczema I've had on my face/neck for 10 yrs just went away.

Gettin old ain't for wussies!
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ilovelabbies
Rookie

13 Posts

Posted - Mar 04 2017 :  6:58:18 PM  Show Profile  Reply with Quote
I hope I never have to go on Prednisone. It gives me panic attacks terribly. The thought of it scares to bejesus out of me.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Mar 04 2017 :  8:28:54 PM  Show Profile  Reply with Quote
There's no reason to be afraid of pred. It certainly helps when the need for it arises. Did you mean you get panic attacks thinking about using pred or it, when you took it in the past, gave you the panic attacks? There is no reason it should give panic attacks. In fact, the very opposite. It makes you feel good again...or "gooder". :-)

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

tsainta
Contributing Member

USA
1547 Posts

Posted - Mar 05 2017 :  12:32:11 AM  Show Profile  Reply with Quote
When prednisone is needed there is no alternative but hospitalization.

Tony-CA

The statistics on sanity say that one out of every four persons is suffering from some sort of mental illness. Think of your three best friends. Are they're OK? Then it's you.
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jmrommes
Contributing Member

1600 Posts

Posted - Mar 05 2017 :  09:04:59 AM  Show Profile  Reply with Quote
Labbies, until you actually need it and take it, you won't have any idea how it will affect you. The long term effects are usually avoided when we take the bursts, and if you need one and get it, you'll be so grateful to be able to breathe again, you really won't care. My suggestion? Put your fear away and wait to see what happens. Most of us get off most bursts with at worst a terrible case of the munchies and a lot of energy that goes away when we go off the med. Occasionally there are other side effects that can be disconcerting, but nothing that is worth your terror. And believe me, if you need it, you will welcome it!

Exercise not only lets me live, it enables me to have a life.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Mar 05 2017 :  09:31:33 AM  Show Profile  Reply with Quote
Joe, have you had a good (echocardiogram stress test) heart workup? COPD doesn't normally result in fluid buildup but heart problems do.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

joeabby
Rookie

USA
24 Posts

Posted - Mar 05 2017 :  12:15:09 PM  Show Profile  Reply with Quote
I had a stress test done in 2003. Radioactive die was injected, they took pictures, then put me on the treadmill. Finally got target heart rate up to 135bpm after raising incline. The only thing they found was what appeared to be damage to my lower left ventricle. Apparently. I suffered a minor heart attack sometime in the past. I have no knowledge of such an event. I have no heart issues nor are there any in my family. What caused the water retention problem is a mystery to me. I weighed around 145 when I went to the hospital. My pulmo found that I had 8 kilos of fluid in my body, so he started me on Lasix [a diuretic pill] & I'm still on it. I lost 23 lbs in the hospital & have gained only 7 of it back. Remember that book 'Yellow River' by I. P. Daily? That's me, for 4-5 hrs every day.
As for the PREDNISONE, I've had no withdrawal problems. However, the rash on my face [sebhorrea] has returned with a vengeance & my arthritic hip is giving me fits. I'm considering going back on Pred & the side effects be damned!! I'm just too old to worry about them. But this itching & peeling on my face is almost intolerable & my hip pain makes walking very difficult. Damned if I do, damned if I don't!!

Gettin old ain't for wussies!

Edited by - joeabby on Mar 05 2017 12:24:24 PM
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