Prednisone: I have really gone downhill... - British Lung Foun...

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Prednisone

challny
challny
34 Replies

I have really gone downhill this summer with my emphysema/asthma to the point that for the last 4 or 5 days I have had no appetite at all and spend almost all of my time in bed. My pulmonologist just wrote me a prescription for 90 10mg. prednisone. Will this help with emphysema? Thanks.

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sassy59

It should help challny and let’s hope you feel better soon. Xx

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challny
challny
in reply to sassy59

Thanks, @sassy59. I sure hope so. Stuff I could do just a couple of weeks ago I now cannot do

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Chriskho

Sorry to hear you are still struggling. Did your pulmonary dr have any answers for you this time ?Please let us know how you get on with the steroids, hope things get much easier soon.

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challny
challny
in reply to Chriskho

I just saw my pulmonary doc less than a month ago. She said my FEV1 was 70 percent, my 02 sats 98. Yet I feel terrible. I told her that and asked if we could change inhalers or maybe get some pred. She said no. Said I did not need pred. Said my lungs were clear and good. So today I called and said I've have never felt worse. She gave me the preds. I just wonder if they help with emphysema. It seems like my GP once said they don't. That's what I'm wondering.

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O2Trees
O2Trees
in reply to challny

Well unless your doc knows something we dont, they should definitely help challny. I was wondering whether you've had an xray to see if anything else is going on. If not might be an idea to ask since this has gone on for a while. But I guess wait and see if you do have significant benefit from the pred. Good luck :)

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Chriskho
Chriskho
in reply to challny

There are side effects to taking regular steroids perhaps that’s why your dr was reluctant to px them. Perhaps a short trial may make you feel more like getting back into your life?

See how you go and have you tried regular breathing exercise? Specially when you feel tense re your breathing. Also did you mention re your anxiety to your Gp . Anxiety alone can have a huge impact on breathing. I have very similar Fev1 and o2 sats around 96% I feel I’m on the right inhalers now, for me (fostair and Spiriva ) don’t need anything else now I’ve stopped getting worked up about it.

If you really do think that it’s not your anxiety causing your breathing worry perhaps you need to see another respiratory physician for a second opinion to put your mind at rest or sort it out. Sorry if I’ve repeated myself here. I think I may have responded similar a while back. Good luck let us know how you get on .

P.s why are you using ventolin ( blue inhaler) regularly ?this should only be for occasional use if you really need it. It could be making your breathing worse as I’ve just read you are on the main 2 inhalers for your condition. Oh and have you managed to cut down on the drinking? Cx

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challny
challny
in reply to Chriskho

Hi,@ Chriskho. You say you have similar stats. How do you feel? I feel worse than terrible. Sometimes I wonder if my pulmonologist is not inflating my breathing test results. Honestly, I feel like I'm end stage. I don't think it's normal for someone with an FEV1 of 70 percent with 98 02 sats to spend day after day in bed and not eating. I think you might be right that I should see another doctor, but I don't really have the strength to do it.

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challny
challny
in reply to challny

Hey again, @Chriskho. My PCP thinks I'm riddled with anxiety. He has prescribed meds for that.

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Chriskho
Chriskho
in reply to challny

Ok be careful with the drinking whilst on anxiety meds. Could cause all sorts of problems .

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Chriskho
Chriskho
in reply to challny

It appears from your past posts that you are one extreme to the other? Either over exercising or man down doing nothing. Perhaps if this is affecting you so badly the sooner you see someone (second opinion) the better. Will you see a private respiratory physician ?

The more you are inactive the worse you will feel as your body and lungs needs oxygen to function but just keep moving don’t overdo things.

You asked how I function. Well I’m ill at the moment with unrelated issues. But with fev1 around 72% and O2 sats around 95/96. I’m pretty well. And very lucky to have found out about it at such a mild stage.Work 2 days, don’t mope about checking my breathing every 5 minutes. My only down time is winter flu time when I can pick up a chest infection easily( work in a hospital).

I suggest if you haven’t already had one ask for a ct scan which will show any problems with your lungs. If all ok you need to check you are on the right inhalers (do take them as prescribed) they are your best friends and will improve your breathing. At first I was only on the blue salbutamol inhaler ( but didn’t need to use it for sob)but my levels went down . now I still don’t use the blue inhaler but use fostair 2 puffs twice daily and spiriva inhaler once a day.

These work brilliant for me and I’ve had remarkable improvement.

Basically you need to find the strength to go see someone about your worries re breathing and your mental health. I feel one is impacting on the other. Let us know how you are doing and what’s your plan. You can do this. Cx

P.s why are you using the blue inhaler this is only for if you need it occasionally as you have 2 regular daily inhalers. May be making your breathing worse?

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challny
challny
in reply to Chriskho

@Chriskho, thanks so much for taking the time to talk. I have a partner, but she does not want to hear about my problems. To answer your question, I'm using the blue inhaler because as far as I can tell the Symbicort and Spiriva do very little to help my breathing. It's true I had been exercising nicely until a couple of months ago -- going to rehab classes, playing golf, taking long walks. But gradually I could do less and less, And now almost nothing at all. I'm already seeing a a pulmonary specialist and a regular doctor. I've seen them both in the last month and told them I wasn't feeling well. I am at my wit's end and having some very dark thoughts. I am glad you are doing well, and, again, thanks for caring.

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challny
challny
in reply to challny

PS, @Chriskho, I have never asked for a CT scan but have often wondered why my doctors have never asked for one. Both my PCP and pulmonologist are at a major hospital in my city. The lung doc is part of a lung group in the main hospital. I've had many chest x-rays, but never a CT scan.

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Chriskho
Chriskho
in reply to challny

Emphysema cannot be diagnosed without a ct scan ! Please insist on having one.

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challny
challny
in reply to Chriskho

What? Is she just basing it on my breathing tests? Does it not show on x-rays? Is she just guessing? I don't think I'm getting the treatment I need. I walk into two doctors offices in the last month, my regular doctors, and tell them I feel terrible and they just send me on my way. I'm NOT a hypochondriac! By the way, two days on pred and I don't feel any better.

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Chriskho
Chriskho
in reply to challny

A GP cannot diagnose emphysema on a chest x ray alone. A CT scan will determine that ( or any other lung disease) I didn’t know what my copd lung disease was until I had a ct scan in January which confirmed mild emphysema ,and mild bronchiectasis in one lung. I was prepared to pay for a ct if I’d have been refused.

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Neville33
Neville33
in reply to challny

maybe u need a CT scan, sputum to see

If anything else is going on...it’s not uncommon with lung disease. Your pulmonary test is only mild...sputum shows if you have picked up any bacteria...

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pepapod

The prednisone is for inflammation. I have moderate COPD and take inhaled steroids daily but have only ever taken the prednisone pills two times - each time when I was in hospital with a chest infection and my lungs were a mess. The prednisone pills did get me moving, but I didn’t handle the side effects well. Hope they will help you, Challny!

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Hidden
Hidden

Just out of interest, have they looked at your heart?

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challny
challny
in reply to Hidden

They looked at my heart two years ago when first diagnosed. What I'm trying to figure out is does everybody with COPd feel like this? Totally wiped out. I'm already dreading the holidays.

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challny
challny
in reply to challny

Hidden, now you have me thinking about my heart, but not in a bad way. Even though I had a cath when first diagnosed, that was 2 years ago. And the dye shot through cleanly. Things change. I feel weak, wobbly and lightheaded. But no chest pain. Maybe time to mention heart to my GP. He just listened to my chest about a week ago, but I would imagine that doesn't tell them much. Aftter my cath, the cardiac doc said I had a slight but benign irregular heartbeat.

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Chriskho
Chriskho
in reply to challny

No......As far as I know most people with mild copd (as you and I )are mostly only affected when having a flare up ‘exacerbation / infection’

Most people ( I believe) are not so lucky and do not know they have copd until later stages, when it’s harder to halt it.

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Izb1

Hi challny, I wonder if you are lacking in something like iron, ask your doctor to do a blood test to see if something is amiss. I have rheumatoid arthritis and suffer with fatigue at times so know how you feel with the tiredness. I do take supplements to make sure that I am not lacking in any vitamins or minerals. I do need to motivate myself some days but once the stiffness has worn off and I get going I always feel better. Wish you the best. Irene x

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hallentine47

Sadly because of the side effects I take this steroid and have done for several years at varying doses depending on how poorly my breathing becomes for whatever reason. Without prednisone I dread to think how I would cope with the breathlessness that would follow. I also have emphysema and COPD and 23% projected lung capacity and currently on 20 mg a day. Sometimes this needs increasing to 40 mg if I am suffering with infection or exacerbation. Sorry you had a bad summer. Lets hope the winter will be kinder to all of us.

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peege

Hi, the Prednisolone is for reducing inflammation. It's prescribed for lots of ailments including lung issues so it's essential for many. Lots of people feel great benefit, not only finding it easier to breath but some get a great feeling of well being. Some have increased appetite when taking it.

Personally I cannot bear taking it, it makes me feel absolutely dreadful with palpitations and very poor sleep though when very poorly the benefits to lungs outweigh the misery. It's always wise to read all the information on any drugs you're prescribed.

Hope you feel better soon

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skischool

May i ask why you feel you need to take prednisolone ?i am sure you are aware that it is often taken by people with lung diseases to help reduce inflammation and swelling of the airways and to help combat infection,something your pulmonologist appears to have ruled out in your case.,anyway i am popping on a quick guide to this drug that you think may help you though i suggest you look at some of it's common side effects especially with regard to mood given that you already admit to being anxious about your health.

beta.nhs.uk/medicines/predn...

best wishes Ski's and Scruffy

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challny
challny
in reply to skischool

Hi, @skischool. The reason I asked for the pred was because I was feeling so poorly and nothing else seemed to be helping. I felt I was running out of options. My 02 sats were 98 at both the lung doc and PCP offices in just the last month, so I don't think I would qualify for oxygen. I know pred is not good for you, but I need something. And you're right, my pulmonologist said You don't need them. But a few weeks later she phoned in the script. I just took my second 10mg. dose this morning. Not sure if I can tell any difference.

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challny
challny
in reply to challny

Ps, skischool ... I mean, I do have lung disease, emphysema with "some" asthma. Thanks for including the article, but I don't think I will read it now. It's just liable to freak me out. I'm hoping so much that these preds get me feeling better.

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Sjf129903

It helps me and the reason you need to eat is to keep up your strengh to make you have energery....beleive me the past 3 weeks I've been suffering the same EXACT thing you are loosing appetite to weak to cook and eat find eating harder to breath so I'd rather breath and decide not to and go back to bed and sleep....so I just started eating soft stuff applesauce..yogurt..mashed potato..macaroni and cheese....I'm sitting right there with you give it a try

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challny
challny
in reply to Sjf129903

Thanks, Sjf129903. I ate some pizza last night. I hope you are feeling better. Are you weak even on the pred?

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Sjf129903
Sjf129903
in reply to challny

I wasn't in the begining but I've been on it for months and it only helps the breathing a bit more

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Hidden
Hidden

Hi Challny

Prednisone is an anti-inflammatory, it should calm the inflammation in your lungs and improve your breathing. See how you cope.

Take care of yourself.

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RedSox

Hi Challny . Chriskho is right you need a CT scan . They cannot say you have Emphysema without a CT scan . You need to insist on it you may have lung scarring or something else . You cannot be diagnosed with Emphysema without the 3 fold combo of CTSCAN, Spirometry/PFT and blood gas . Problem is many folks running around with Emphysema and don’t have it because without CT scan it may be something else. My opinion is get your PCP to give you a referral for a Pulmonologist that insists on it . You will drive yourself crazy assuming stuff without the concrete evidence of a CT scan which too is never 100% , maybe 99.9 % . My advice go to ER if you have to just get that CTScan

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challny

I'm close to going to ER. I have been all day in bed for 5th straight day. Something very very wrong. Thanks all for your input.

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lKeith

challny

Hi only just picked up your post,so sorry that you are feeling unwell. Prednisalone will not aid emphysema treatment but it should give you a little more energy as they are steroids. Although you don't feel like it staying in bed is not good, get out & get some fresh air or at least sit in a chair. This should help to keep you from getting too stiff and keeps parts of you moving. difficult tho' it may be try to keep your pecker up.

IKeith

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