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tsainta
Contributing Member

USA
1555 Posts

Posted - Apr 03 2016 :  8:02:30 PM  Show Profile  Reply with Quote
Can anyone on long-term oral prednisone give me an idea of their dosage, time on it, and side effects? Thanks.

I have been on 5mg/day for about seven years with no side effects except some osteoporosis, which now seems to be responding to Prolia. But now I think I need to increase my daily dosage of prednisone to remain reasonably mobile.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.

Sam-Tx
Senior Member

591 Posts

Posted - Apr 04 2016 :  04:02:20 AM  Show Profile  Reply with Quote
Tony, I've been on 10 mg/day for 10 years as what the doctors call a "maintenance dose". No known side effects. Take it at bedtime every night. No plans to change at all.
Sam
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tsainta
Contributing Member

USA
1555 Posts

Posted - Apr 05 2016 :  12:47:22 AM  Show Profile  Reply with Quote
Thanks, Sam. Any particular reason for taking it at bedtime?

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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Sam-Tx
Senior Member

591 Posts

Posted - Apr 05 2016 :  09:44:12 AM  Show Profile  Reply with Quote
Tony, I'm too old and dumb to remember why. It probably makes no difference. I also eat a banana every couple of days; either in morning cereal or in bedtime snack. Not sure which medicine can sometimes cause leg cramps but the banana helps that. My pattern for taking medicines is just a pattern of old habits. This help me not screw up on them.
The only new habit in the last few years is to always carry a concealed gun when I leave my property. An old person on oxygen walking in a parking lot is like having a target painted on your back!
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tsainta
Contributing Member

USA
1555 Posts

Posted - Apr 05 2016 :  10:40:33 AM  Show Profile  Reply with Quote
Funny you should mention the gun. I got a concealed carry permit for exactly the same reason. The fight or flight choice no longer applies to me. I can do neither.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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skhill
Member

USA
185 Posts

Posted - Apr 05 2016 :  8:07:41 PM  Show Profile  Reply with Quote
I got my carry permit a few years back because women have always been easy targets.
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Sam-Tx
Senior Member

591 Posts

Posted - Apr 09 2016 :  07:40:35 AM  Show Profile  Reply with Quote
Tony, I didn't mean to highjack your thread on Prednisone. However, I do think both of these subject are relivent and valid on here. But, I'm going to highjack it one more time - just to try to help you out.
You've mentioned on several recent posts about 90% of your toothpaste being in the last 10% of the tube. Here's a suggestion for you: On your next tube try opening the other end first - the end that has a cap on it!
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fatpuppy
Member

163 Posts

Posted - Apr 09 2016 :  09:37:02 AM  Show Profile  Reply with Quote
quote:
Originally posted by Sam-Tx
the end that has a cap on it!


Opening the end without the cap is like eating the bottom of an ioe cream cone first

ďAs democracy is perfected, the office of president represents, more and more closely, the inner soul of the people. On some great and glorious day the plain folks of the land will reach their heartís desire at last and the White House will be adorned by a downright moron.Ē H.L.Mencken 1920
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PennyPA
Contributing Member

USA
5757 Posts

Posted - Apr 09 2016 :  10:56:20 AM  Show Profile  Reply with Quote
But if you peel a banana from the bottom end, you won't have any strings!

And I was always taught to take the pred in the a.m. so you wouldn't be kept awake all night. HOWEVER, that's for a burst...not an ongoing maintenance dose. I think your system would get used to it when it's in your system continually like on a maintenance basis.

****************************************************************
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





Edited by - PennyPA on Apr 09 2016 10:59:51 AM
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tsainta
Contributing Member

USA
1555 Posts

Posted - Apr 09 2016 :  12:03:37 PM  Show Profile  Reply with Quote
Sam! Is that what that twisty thing at the other end is for? Well, I'll be! The one who must be obeyed has been telling me I've been keeping my oxygen on too low a setting.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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Sam-Tx
Senior Member

591 Posts

Posted - Apr 09 2016 :  11:23:30 PM  Show Profile  Reply with Quote
Tony, You can always count on any ideas I suggest are based on personal experience or personal mistakes!
Fully understand "the one who must be obeyed". Suggest you turn oxygen up and keep it there. That way when any slight deveation from our normal perfection might occur, we can blame it on trying our best to follow "expert and superior advise"!
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tsainta
Contributing Member

USA
1555 Posts

Posted - Apr 10 2016 :  01:11:46 AM  Show Profile  Reply with Quote
10-4.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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SandyT
Rookie

USA
2 Posts

Posted - May 21 2016 :  10:48:20 PM  Show Profile  Reply with Quote
I am so happy to have stumbled upon this forum as it is very encouraging to read about what others with copd are having to cope with. I don't feel so alone. A while back my doctor gave me a Prednisone pack of 6 pills of 4 mg and then next day 5 pills, etc. When I reached the third day, I woke up feeling great, could breathe and actually was able to vaccum and do a little house cleaning. This lasted for two days and I cherished every moment because I felt energized and it was wonderful. But...that was it. I'm back to 5 mg now and don't have the same energy that I had. I left a msg for my doctor to give me at least 10 mg of Prednisone. I wish I could take more than 10 mg but I don't if that is a good idea or not.
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tsainta
Contributing Member

USA
1555 Posts

Posted - May 22 2016 :  10:08:42 AM  Show Profile  Reply with Quote
Sandy, there can be side effects, like accelerated decreasing bone density, water retention, puffiness in the face, and adrenal gland shut down. It's all a matter of trade offs.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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PennyPA
Contributing Member

USA
5757 Posts

Posted - May 23 2016 :  10:24:15 AM  Show Profile  Reply with Quote
You were on what is called a "burst", Sandy. Maintenance doses are for those in the very, very severe category. Do you know what your FEV1 is?

****************************************************************
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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judyw
Rookie

USA
16 Posts

Posted - May 23 2016 :  10:47:42 AM  Show Profile  Reply with Quote
Thanks for the chuckles this morning. Always appreciate them and BTW, hadn't thought of Rumpole in a long time. Do you suppose he is still retired and living in Florida? Well, now guess I can go back to my worrying.....
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PennyPA
Contributing Member

USA
5757 Posts

Posted - May 23 2016 :  4:41:55 PM  Show Profile  Reply with Quote
Who, pray tell, is Rumpole?????

****************************************************************
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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Roadrunne98
Member

USA
168 Posts

Posted - Jul 13 2016 :  7:13:54 PM  Show Profile  Reply with Quote
Penny-just came from the Dr. Told him I need something, sob getting supper ready, walking across the house, just doing little things. And I am on 02 liters, 24/7. He took the breathing test today and it was 23 . Feb. of this yr. it was 27 when I had a bad cold and went into the hospital 2 days after that test. Put on all that I V steroids, and pill steroids when I came out. And here I am, worse that ever. I can't afford to gain more weight. nO one said they gained weight, has any of you gained wt. on pred.????????he gave me brio, anoro, and dulera. He said try each for the week, and see if one works ok to keep me on it, or he will put me on the lowest dose of pred. To give me more mobility and a better quality of life. If any one of these someone especially likes, tell me before tomorrow and I'll try it first tomorrow. Thanks
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Sam-Tx
Senior Member

591 Posts

Posted - Jul 13 2016 :  10:07:43 PM  Show Profile  Reply with Quote
Carol, Ask about Daliresp. I can't speak for anyone else, but it really helped my breathing and stopped my sob. HOWEVER, I lost so much weight taking it that in a few months I had to quit it. It took the Daliresp a week or so before I suddenly realized that I was feeling better and coughing up stuff much less. But in about 4 to 5 months I was down about 20 pounds and began looking like a concentration camp survivor. Dropped it and weight came back enough that I can maintain it with exercise.
Hope this helps.
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Roadrunne98
Member

USA
168 Posts

Posted - Jul 14 2016 :  08:55:42 AM  Show Profile  Reply with Quote
This is a pill. Do you take any inhalers, or 02. If i don't get help with an inhaler I will have to resort to a pill. Ii hate to put pills in my body that can affect other parts, if I I can just treat the lungs with inhalers, and stay away from that pill affecting other parts of my body. But I might have to if inhalers don't work. Thanks for the info. That one I never heard of.
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Helen-CO
Member

243 Posts

Posted - Jul 14 2016 :  11:33:05 AM  Show Profile  Reply with Quote
Roadrunner--Prednisone is notorious for causing weight gain, which in turn causes more SOB. I'm at 27% FEV-1 and find the less I weigh, the more I can do. If you're overweight, ask about pulmonary rehab, or just start walking around your house and increase the time a little more each day. Lifting light weights can help protect your bones. In addition to causing osteoporosis, pred can cause cataracts and decrease the immune system.
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Jan-KS
Member

USA
58 Posts

Posted - Jul 28 2016 :  04:13:27 AM  Show Profile  Reply with Quote
I've been on a maintenance dose of 10 mg steroids for about 7 yrs. Gained weight and going in for cataract surgery next week (I'm only 55). But I don't believe it was the 10 mg dosage my stupid overuse of hospital ER's before I realized I was having panic attacks and there was nothing wrong with me other than on 2 specific occassions (that landed me in ICU). In the ER they give you a big dose of IV Steroids equivalent to 80-120 mg in pill form and then send you home with a taper that starts at 80 mg. I did that 8 times in a year and a have and gained 70 lbs and got cateracts. I also have a severe vitamin D deficiency. I don't think the 10 mg will do you any harm but I don't think it will do you any good either - you'd probably have to take 20-30 mg before you'd notice a reduction in the inflammation. of your airways and the nice side benefit of less arthritis pain - but at that dosage you will be sorry and you will be playing with fire. PLEASE don't increase your dosage. I'm tapering to 5 mg ASAP then I'll need to taper 1 mg at a time but I want off this drug.

Jan C
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MDC
Member

301 Posts

Posted - Jul 30 2016 :  3:30:31 PM  Show Profile  Reply with Quote
I take 5 mg per day. If I have a flareup I might do a short dose burst
starting at (Per Day) 50-40-30-20-10- then back to 5 a day. Worked good so far. Not really worried about long term use, more concerned with quality of life.

Only need burst maybe 3-4 times a year so far.

Mike

"I don't know what the future holds, but I KNOW WHO holds my future"

Edited by - MDC on Jul 30 2016 3:30:56 PM
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Roadrunne98
Member

USA
168 Posts

Posted - Sep 12 2016 :  2:06:53 PM  Show Profile  Reply with Quote
I am disgusted with myself today and my condition. I am on 02 and 5 weeks I am trying breo to see if it helps me. I am good for you know what. I can't walk without my husbands arm, in the house I use the walker to get across the house back and forth, today I am in the kitchen trying to make a casserole , with all the resting I have to do it will be supper by the time it's even prepped to go in the oven. I think I might have to go on that prednisone. Will that give me the strength I need to at least enjoy making supper? I can't afford to gain more weight. Before I do tell him to do the pred. , I read somewhere that some people are on 2 meds and use the nebulizer. What are the 2 meds together, I would love to try the spireva. Help me please, I don't even want to go out because it's exhausting to just get dressed to go out, I sit down to get dressed. Thanks
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PennyPA
Contributing Member

USA
5757 Posts

Posted - Sep 12 2016 :  3:41:33 PM  Show Profile  Reply with Quote
Firstly, what are the symptoms that are causing you so many problems? Secondly, are you seeing a pulmonary doctor or a general practitioner? Thirdly, what meds are you on? Fourthly, have you been through a pulmonary rehab (i.e. exercise) program?

If you have a lot of sob, the right combination of meds can help alleviate that. Unfortunately, the only thing that helps weakness is being close-ish to your ideal weight and exercise.

****************************************************************
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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buick
Rookie

USA
1 Posts

Posted - Feb 07 2017 :  6:34:25 PM  Show Profile  Reply with Quote
prednesone make me very hyper, hyperventilat when on 60 mil,is this normal?
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eves
Member

Canada
41 Posts

Posted - Feb 08 2017 :  09:27:05 AM  Show Profile  Reply with Quote
TSainta, I have been on many bursts in last two years, simply because I show up in ER, not related to 'exaserbation' as those are hard to determine and thus I think they just throw them at me to keep me home. They used to work but seem to not help now.
I have noticed muscle spasms post usage of the 50 mg for 5 day burst. I always check twice to see if it could be the med. So I experience i kind of dull achy feeling in head, not like a headache, and upper jaws and legs, all while moving those muscles.
Over a year ago I asked the 'then' pulmo if we could try a regular dose, which he prescribed 5 mg per day and told me I could up it to 10 mg. I tried it for a short time but did not see a benefit and new pulmo does not even believe in preds unless in DIRE circumstance. But I did start eating bananas to try and cope with that achy/spasm feeling. Preds make me feel generally ill. A few times they gave me a false good feeling, which of course was nice, but that is a brain thing and not a lung thing. Preds are funny things.
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tsainta
Contributing Member

USA
1555 Posts

Posted - Feb 08 2017 :  1:17:46 PM  Show Profile  Reply with Quote
I hate prednisone! But today, approaching three weeks after hospitalization from pneumonia, I'm on 30 mg. There is no other way to deal with the residual inflammation, which is still affecting my breathing. At the same time I am gently exercising aerobically and find that doing so helps me cough up stuff that even my nebulizer doesn't bring up. Gotta use all the available resources.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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eves
Member

Canada
41 Posts

Posted - Feb 09 2017 :  08:50:18 AM  Show Profile  Reply with Quote
Are you on antibiotics at the same time? It is frustrating for sure. I feel for you. I think there are places that inhaled meds just don't reach and so those inflamed parts just keep acting up and swelling.
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tsainta
Contributing Member

USA
1555 Posts

Posted - Feb 09 2017 :  12:44:36 PM  Show Profile  Reply with Quote
I was on an antibiotic for two weeks after the hospitalization. And, sadly or luckily, prednisone will deal with the inflammation inhaled meds can't reach.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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sslei
Member

69 Posts

Posted - Feb 11 2017 :  5:34:30 PM  Show Profile  Reply with Quote
For the last 3 weeks I have had a runny nose, maybe allergies, cough and generally feeling lousy, went to a prescheduled appt. with pulmo,
she did not like the way the cough sounded , so a shot in each hip, trip to hospital for chest x-ray and swab of nose for flu test. And prescriptions for doxycycline and 60 Mg of predisone, 3 a day for 3 days , the 2 a day and on till prescription is gone. I have never taken more than 5 mg ,except for once in hospital 40mg ,then 20 with an IV .

The doctor was trying to prevent me from going into hospital, the last time I was in there in Oct , they gave me some predisone, don't know what mg , then they would give me insulin, then take a blood test and then repeat all this , finally a transfusion. It was not the pulmo doing all that though.

tsainta , I was just diaganosis by endrocologist(sp) with pretty bad bone loss in my hips and I am supposed to start actonel once a month for 3 monthes at 147.00 a pill ,but wanted to wait till I was through with thatever respiratory problem I have first. Finally got a little energy today.Do you still take the prolia?
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tsainta
Contributing Member

USA
1555 Posts

Posted - Feb 11 2017 :  10:32:41 PM  Show Profile  Reply with Quote
sslei, yes, I'm still on Prolia every 6 months. The spinal fracture problems I had haven't bothered me for over a year. My bones are happy.

Tony-CA

I stayed up all night to see where the sun went, and then it dawned on me.
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joeabby
Member

USA
32 Posts

Posted - Feb 18 2017 :  10:51:20 AM  Show Profile  Reply with Quote
When I felt something coming on, sinusitis or bronchitis, my ex-pulmo called me in an Rx for Prednisone & a Z-pack {azithromicin}. I was getting different reactions from the Pred. At first, a jolt of energy, then sleeplessness & anxiety. I didn't like it, so I weaned off.
For the past year, my dosage varied from 20 to 60mg & I'm used to it with no side effects. I'm only taking 20mg now & feel nothing from it. Ironically, I have no appetite most of the time & have to make myself eat. I'm still 10-15 lbs underweight. Everyone wants to donate......

Gettin old ain't for wussies!
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PennyPA
Contributing Member

USA
5757 Posts

Posted - Feb 18 2017 :  5:31:06 PM  Show Profile  Reply with Quote
What dosage are you on now? And why are you on a continuous regime of pred?

****************************************************************
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
Member

USA
32 Posts

Posted - Feb 19 2017 :  08:43:48 AM  Show Profile  Reply with Quote
Penny, I'm on 20mg/day of Pred. It seems to be a consensus around here [pulmos, nurses, therapists] that Pred is an integral part of COPD therapy. They say it 'opens you up' to breathe easier. I'd love to get off it but........

Gettin old ain't for wussies!
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jmrommes
Contributing Member

1602 Posts

Posted - Feb 19 2017 :  08:52:15 AM  Show Profile  Reply with Quote
Joe, I think you've probably been misinformed about prednisone. While it certainly is a mainstay of COPD therapy, the vast majority of us use it ONLY when absolutely necessary, and then ONLY for a short while, usually 5 -10 days and then done. It's estimated by most pulmonologists that less than 10% of their patients are on long-term prednisone. Docs don't like to prescribe it any more than most of us like to use it because of all the long term side effects. Some folks just can't get off the stuff, but those folks are definitely in the minority.

Prednisone does relieve the inflammation in the lungs, thus reducing mucous production and opening things up, but at a major cost to the patient.

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

USA
32 Posts

Posted - Feb 19 2017 :  09:34:27 AM  Show Profile  Reply with Quote
Thank you for that, guess I didn't do my homework. I will ask my Pulmo. I'm also thinking it is compromising to the immune system. Could be at my age & progression, the side effects are secondary to the benefits. I will ask, though.

Gettin old ain't for wussies!
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PennyPA
Contributing Member

USA
5757 Posts

Posted - Feb 19 2017 :  11:23:52 AM  Show Profile  Reply with Quote
Joe, are you in a nursing home or similar situation? I'm not sure that even those of us on a daily regime of pred are on that much a day.

If you take it in the a.m., it shouldn't interfere with sleep.

****************************************************************
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
Member

USA
32 Posts

Posted - Feb 19 2017 :  1:44:53 PM  Show Profile  Reply with Quote
I was taking 20mg/day prior to my big crash on 11/27. Then had 2 back to back trips to emergency room for 2 more weeks with sepsis pneumonia. After 4 weeks in a rehab facility, I came home. I've been home for 5 weeks. I can't be sure what all meds I was on in the hospital, but a week into rehab, they started me back on Pred. My new pulmo was there thru it all, very pro-active, calling the shots. He 'drained' 15 lbs of fluid out of me with Lasix, a dieuretic; I'm still on it.
I do take it in the mornings, but don't know if it's doing any good. My only other meds are nebulized albuterol, an aspirin, & montelukast [Singulair] for my sinus drainage.

Gettin old ain't for wussies!
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PennyPA
Contributing Member

USA
5757 Posts

Posted - Feb 19 2017 :  4:17:55 PM  Show Profile  Reply with Quote
To me, not really knowing how serious you are, that sounds like a weird med regime since you're on no meds for your copd. Why not call your doc and find out why you're not in any meds for your copd and if you can't get a good answer, you might consider changing pulmonary docs. Most people with copd are on a long-lasting bronchodilator and a corticosteroid at the least with albuterol as a rescue...or, like in your case, in a neb 4 times a day.

****************************************************************
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
Member

USA
32 Posts

Posted - Feb 19 2017 :  6:54:49 PM  Show Profile  Reply with Quote
I forgot to say here that I'm on Advair 500/50, a cartiosteroid. I was also on Spiriva for 8 yrs, but my new pulmo stopped it while I was in the hospital. As for Albuterol, I have never realized any benefit from it in any form. I use it before I do my Advair to open the airways. Whether it does or not, I don't know; I feel no different after use.
As for how serious it is, I honestly don't know, the later stages, I suspect. Before my last relapse, I only used O2 when I moved, & at nite with my CPAP. Now, I'm on 4L 24/7. At rest, I can lower that to 2L. A week ago, I self-sustained 95-96% O2 when I inadvertently forgot to use my canula. I was also on a Bi-pap in the hospital & for 4 months before that. After another overnite oximeter test, I no longer qualify. Medicare requires that your O2 has to drop below 90% for half of the nite while on only 2L O2 while not using Bi-pap/CPAP. That was a very positive for me!!

Gettin old ain't for wussies!
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