Steroids For Emphysema

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Lauralee Says:
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I'd like to ask a question. I've had emphysema for about 15yrs and it's been particularly bad the last 5yrs.

I can *feel* it get worse every year. It also takes longer and longer to go away to a level to where I can walk around my home, get dressed, or stand-up to cook!

Most of the time getting to the bathroom is exhausting.

Recently, my GP gave a course of steroid pills and said I could take them for 3-5days but no longer; "cos they're really bad for you". I asked in what way & she said my bones.

This makes no sense to me cos I've had osteo-arthritis since I was 20yrs old; and both knees are bone-on-bone - no cartilidge left.

So, since that already exists, what else is wrong with them?

I got to tell you, after 2 days I felt as if my illness reversed by 4yrs!! But they won't prescribe them full time and I don't know why.

My late husband had MS and when he had an attack his body was flooded with so much steroids he'd get irrationally angry.

Mine are nowhere near anything like that. If anything, I'm overjoyed cos I can have a semi-regular life. As it is at this point; I have approx 1wk or less per month of regular life. The rest of the time I must stay in bed; even standing makes me not able to breathe.

At the end of the day, I'd rather have my bones end up as dust than not breathe. Cos if you can't breathe - what else is there?

So, can someone please explain to me why the only thing that has ever worked for me on this horrible disease is restricted?

Do I need to only take it for *special* occasions - like going to my own funeral?!

Thank you.

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Tina Says:
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Hi Lauralee

I’m not a Doctor or medical professional, but I have been on steroids at least three months on and off for different arthritic conditions as well as nasty upper respiratory infection that lasted two months. I don’t know the extent of your condition as far as your bones, maybe your GP thinks that they are already too weakened. Maybe that’s why they only prescribe for a few days. For some people you can prescribe for longer, me case in point. However, it is only because the benefits outweigh the risks.

Yes, in a sense long term steroid use is never good as it weakens your bones, your immune system, can give you diabetes, and reacs havoc on connective tissue.

I would suggest calling your GP for clarification or get a second opinion.

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Eileen Says:

Re: Tina (# 1)

See a pulmonologist if possible! Please look up the risk of steroids & see if benefits outweigh risks! Yes breathing is second on the list of Maslow hierarchy of needs!

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Lin Says:

Lauralee, I could hardly believe it when I read your post. I'm in the same condition and yes, I would take anything that would help my breathing, even if it did shorten my life. Because as you said, this is not living. But prednisone does not help me much, and the last time I tried, the rage took over and I had to go hide out until it passed. Now, as my last hope, I am doing an online pulmonary therapy program. I'm on the 4th day and already feel almost hopeful that I might recover somewhat. I won't name it because the admin will think I'm promoting something when I'm not. I just want to help you realize there might be another way, and save the prednisone for short intervals.

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Kevin Says:

Hello Lauralee,

Having Osteo-Arthritis sounds extremely painful and I'm terribly sorry that you have had it since you were 20. According to the National Insitute of Health there are a number of other bone related issues that can come from taking medicines that have nothing to do with the deterioration of your cartilage. Many steroids cause bone spurs, bone deterioration, a decrease in the bodies ability to metabolize calcium and vitamin D and can even cause osteoporosis itself.

There's an old saying that things can't get much worse, this is definitely not one of those times. It would be terrible to have you take this medicine and "feel better" for the short term but then you lose so much bone mass that eventually you can't walk or do anything without having your bones breaking. What quality of life the osteo-arthritis had left you could be taken away and that's what I believe your doctor is trying to avoid.

I really wish you the best and I'm sorry that the steroids made you feel better but can't be a long term solution. I do hope that you and others in your situation find a medicine that works for you or one is developed in the near future. We all deserve a decent quality of life.

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Lauralee Says:
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Re: Kevin (# 4)

Thank you for your honest answer, but with all due respect, I'd rather have the ability to move or get out of bed without the dyspnea that will rob me of my last year or 2 of life...

Pain killers work for the arthritis (before they took them off the market in Feb 2018 - and ever since I am virtually bed- bound; and the fact my blood oxygen goes down during these extreme continual dyspnea attacks don't allow me to think quite as clearly - and I feel I am being robbed of my right to even get my affairs in order.

I am suffering.

Thanks for caring to write.

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Lauralee Says:
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Re: Lin (# 3)

Thank you for your reply.

It's too late for me for anything to work...

I'm on my last year of my life & just think they should allow me the drugs that work now, as I have no future.

Everyone has the right to die with dignity & in as much comfort as possible so that I can get my affairs in order.

I've been leaving myself to the doctors for this for 10yrs now & they deny my illness.

I'm tired of being lied to & told "good luck"... I *know* won't make it that long, and shame on the ambos & ERs whom I went 4x in. I told them my problem, but they don't use the word 'emphysema", only CPOD - so, I'm not even put on oxygen!

The first time they put me in a little hallway / ante room (near the morgue waiting for me to die), and yes - the staff had a bet pool going on TOD!!

The next 3x I got sent to a psych... I wouldn't call an ambulance if my life (again) depended on it!!! That was 4yrs ago.

I feel discouraged & dismissed.

I had a Prof write me a note a year ago that not only should I be allowed to qualify for lung-reduction surgery, he thought I deserved a lung transplant... I'm only 57. What are they saving the spots for? Who gets approved? Perhaps 20+ years older than me rich ppl?!

Ok, fine - don't save my life... But allow me my last months in as much comfort as possible!!

Steroids don't have an anger effect on me at all! All I felt was joy for one normal day to just be able to take care of myself & home again.

Isn't there some line in the sand where they can just admit the inevitable and treat my suffering??

All I want is a fair go to let me be allowed to be READY to go... Not having things sorted for the inevitable yet takes away my natural rights away as a human member of society.

I only want what's fair; and has always been legal in Australia before!!

The govt worrying more about ppl using long standing drugs in my case are now being denied cos some idiots are drug abusers...

I guess me & my kind are just collateral damage now...

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Lin Says:

Re: Lauralee (# 6)

Lauralee, are you saying they treat prednisone the same as opioids? If so, this is outrageous!!!

They don't do that here in the US, as far as I know. The doc gives me prednisone everytime I sneeze. I take 10 mg tablets x5, then taper down a few days at a time.

That method does not trigger unbearable rage. But when I tried taking it longer I was homicidal. Be glad it does not have this effect on you.

Can you purchase it outside of your country? I have heard of many conditions that prednisone helps, so you might get it from the same place I have to get my breathing meds (because Medicare won't pay for what my doc prescribes).

Do you use an oximeter, a finger oxygen reader? What is your saturation?

Are you not on oxygen?

You are in my heart.

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