predniSONE

Posted by @ling @wangling, Feb 13 4:51pm

Hi Everyone,
I just saw my pulmonologist and he prescribed me 5 days of prednisone because he heard some wheezing sound in my lungs. I have osteoporosis and he said 5 days won't affect my bones. But I know that steroids like prednisone should be avoided. I do know people use it. Any experiences to share? Under what condition do you take it?
Many thanks!

Ling

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I'm neither a doctor nor an expert, but small doses of steroids aren't especially dangerous.
Continued use can be problematic, definitely.

REPLY

Hello, I am s 1st time user of prednisone 20 mg. prescribed for 5 days. On my 4 th day today, I am much more productive, positive , happy & my extreme pain on movement or laying down to sleep has lessened. 😊What does this mean? I am artificially ramped up or I am healing? I agreed to try this because as a 15 + years as a BE patient I can’t tolerate Rifampim or the 3rd torture antibiotic unfortunately🥹. I have tried with 100% success by day 2 to get welcome relief from Zithromycin. My Kaiser pulmonology dept has cut me off! I took 3 total 5 day Rxs in 2925 - all worked & got me back on my feet breathing! only 2 Rxs were from Kaiser( a loving relative physician took it on me & wrote my 3 rx .) They say if I get a superbug- I will not have immunity, I say so what, at 83 It has helped me enjoy life despite my MAI . Waiting to hear others advice on prednisone? It seems too good to be healthy in the long run??? Thanks for any info❤️ Judy , Nana73 really now 83😁

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Profile picture for nana75 @nana75

Hello, I am s 1st time user of prednisone 20 mg. prescribed for 5 days. On my 4 th day today, I am much more productive, positive , happy & my extreme pain on movement or laying down to sleep has lessened. 😊What does this mean? I am artificially ramped up or I am healing? I agreed to try this because as a 15 + years as a BE patient I can’t tolerate Rifampim or the 3rd torture antibiotic unfortunately🥹. I have tried with 100% success by day 2 to get welcome relief from Zithromycin. My Kaiser pulmonology dept has cut me off! I took 3 total 5 day Rxs in 2925 - all worked & got me back on my feet breathing! only 2 Rxs were from Kaiser( a loving relative physician took it on me & wrote my 3 rx .) They say if I get a superbug- I will not have immunity, I say so what, at 83 It has helped me enjoy life despite my MAI . Waiting to hear others advice on prednisone? It seems too good to be healthy in the long run??? Thanks for any info❤️ Judy , Nana73 really now 83😁

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@nana75 and @ling I know the conventional wisdom is that prednisone will lower our resistance to infection if we have Bronchiectasis. But, for me it is a lifeline at times.
I use a low-dose inhaled corticosteroid (Symbicort) every day to control my asthma. When that is not enough, I am prescribed a two-week course of prednisone. I also have both rheumatoid and inflammatory arthritis that flare from time to time. To get back on track I have sometimes been prescribed prednisone for two months or longer.
When I expressed concern to my pulmonologists, they said it is a tool not to be used casually, but when the risk:benefit analysis is done, the slightly increased risk of infection is less than the risk of not being able to breathe or move, and safer than the increased inflammation in lungs and joints, which also does (ireversible) damage.

Since I regularly use steroids, my DEXA is done every 2 years to check bone health - so far so good. And other than Covid in 2024, I haven't had a lung infection in over 3 years.

If you are concerned, discuss it with your doctors, but I think you'll find they weigh the risks when prescribing.

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Thank you! The only issue I don’t know is which Rx is safest for someone 83: longterm prednisone or longterm Zithromycin . I have very conservately taken Zithromycin ( after begging for renewals) because it stops the flareups cold! 24-48 hours & I am breathing & out of the woods. I wait until I am desperate & none of my supplements are hitting it. In 2025 I used a 5 day pack exactly 3 times. My pulmonologist said that was too much. You are right to believe in something that has helped you -

REPLY
Profile picture for Sue, Volunteer Mentor @sueinmn

@nana75 and @ling I know the conventional wisdom is that prednisone will lower our resistance to infection if we have Bronchiectasis. But, for me it is a lifeline at times.
I use a low-dose inhaled corticosteroid (Symbicort) every day to control my asthma. When that is not enough, I am prescribed a two-week course of prednisone. I also have both rheumatoid and inflammatory arthritis that flare from time to time. To get back on track I have sometimes been prescribed prednisone for two months or longer.
When I expressed concern to my pulmonologists, they said it is a tool not to be used casually, but when the risk:benefit analysis is done, the slightly increased risk of infection is less than the risk of not being able to breathe or move, and safer than the increased inflammation in lungs and joints, which also does (ireversible) damage.

Since I regularly use steroids, my DEXA is done every 2 years to check bone health - so far so good. And other than Covid in 2024, I haven't had a lung infection in over 3 years.

If you are concerned, discuss it with your doctors, but I think you'll find they weigh the risks when prescribing.

Jump to this post

@sueinmn, Many thank Sue for being here to share your experience. I got the picture. Having chronic conditions we have to always try to balance the risks and benefits of the medication.
How long have you been using prednisone the way you described?
Take care!
Ling

REPLY
Profile picture for Scott R L @scottrl

I'm neither a doctor nor an expert, but small doses of steroids aren't especially dangerous.
Continued use can be problematic, definitely.

Jump to this post

Thanks, Scott for your input.

Ling

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I had the same experience -- wheezing after about 9 months in a trial that was studying inhaled Arikayce vs. placebo. (We don't know, and never will know, which I had.) At the time, I had a sequence of 2-3 upper respiratory viruses, and the CT done then showed extensive inflammation, so it wasn't clear where the wheezing came from. I was prescribed the prednisone taper twice within 2-3 months, and now I am on daily Breo which includes inhaled steroid. None of my docs are concerned about bone loss or increased infection risk with inhaled or short-term oral steroids as those risks are very small compared to the risks of out-of-control inflammation from infection, BE and MAC. (They are also evaluating for asthma given various signs and symptoms, but that looks unlikely at this point.) I will see the BE/MAC team and get another CT over the next 2+ weeks and we will assess these last 3 months of watch and wait while off meds for the MAC and on inhaled steroid.
I find it difficult to manage a good assessment of what is causing what, when there are so many variables with BE/MAC and related conditions!

REPLY
Profile picture for @ling @wangling

@sueinmn, Many thank Sue for being here to share your experience. I got the picture. Having chronic conditions we have to always try to balance the risks and benefits of the medication.
How long have you been using prednisone the way you described?
Take care!
Ling

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@wangling 30 years - except the Symbicort, which has been either 3 or 4 years. Before that I used nebulized Budesonide (an inhaled corticosteroid) 3-14 times per week, depending on symptoms for about 5-6 years.

REPLY
Profile picture for Sue, Volunteer Mentor @sueinmn

@wangling 30 years - except the Symbicort, which has been either 3 or 4 years. Before that I used nebulized Budesonide (an inhaled corticosteroid) 3-14 times per week, depending on symptoms for about 5-6 years.

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@sueinmn, Many thanks again, Sue!

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Profile picture for lvnl @lvnl

I had the same experience -- wheezing after about 9 months in a trial that was studying inhaled Arikayce vs. placebo. (We don't know, and never will know, which I had.) At the time, I had a sequence of 2-3 upper respiratory viruses, and the CT done then showed extensive inflammation, so it wasn't clear where the wheezing came from. I was prescribed the prednisone taper twice within 2-3 months, and now I am on daily Breo which includes inhaled steroid. None of my docs are concerned about bone loss or increased infection risk with inhaled or short-term oral steroids as those risks are very small compared to the risks of out-of-control inflammation from infection, BE and MAC. (They are also evaluating for asthma given various signs and symptoms, but that looks unlikely at this point.) I will see the BE/MAC team and get another CT over the next 2+ weeks and we will assess these last 3 months of watch and wait while off meds for the MAC and on inhaled steroid.
I find it difficult to manage a good assessment of what is causing what, when there are so many variables with BE/MAC and related conditions!

Jump to this post

@lvnl , Many thanks for sharing your experience.

Ling

REPLY
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