Prednisone

Definitely take this up with your primary care doctor or pulmonologist. It's possible that your body needs a stronger dose but you need a clinician in charge of finding the best dose.

That's what I'm thinking, especially since I grew up on frequent high dose bursts. I do have a pulmonary/sleep specialist. Next time I feel I need I'm just going to tell him, if I can remember that is. Having Narcolepsy sitting in the waiting room just drains the life out of me and all I can think about is going home to sleep by the time I see him. Thank you for your response.

Born with Addison's Disease and taken steroids my whole life. Am no 73 and developed Pulmonary Fibrosis from my Ankylosing Spondylitis. I had to take 200mg of hydrocortisone per day for 5 days and taper off for 5 days to overcome acute exasperation. I can only take Cortef which is half the strength of prednisone. It only works if you get a high dose and stop the disease progression. Some doctors only want the bare minimum. As a guy whose taken steroids for 69 years, only a high dose will work otherwise is just a wasted effort.

Just one question. Have you ever taken a biologic, Dupixent for example? I am an emphysema/bronchieactisis patient and it really helped me to stay off the prednisone & keep my lung function high. You seem like maybe a good candidate.

Well jackc many of us are or will be put into a situation where we don’t have much choice about what we have to take or do. I guess what I’m saying is you might just have to “roll the dice” on this one but it should always be your choice and how it goes down well, you hope for the best. Pleasure to make your aquaintance, Robert

I am on Dupixent and have had to take short bursts of prednisone but usually it's a 40mg x 10 days, then 20 mg x 10 days. It is not a fun drug to be on but it sure gets the inflammation under control. Best to bounce it back to your Pulmo re the Dupixent, as I believe that it is Pulmonary Fibrosis is not one of the indicators for use.
BTW - not sure what Robert was trying to convey!

You never know what cards you are dealt with in this world. You just have to play the hand you have. Right now, my shortness of breath, chest pains and lack of energy is starting to take its toll. My oxygen drops to 77 to 81 on the Inogen set at 5 and 6 when exerting myself to take care of my wife and myself. Gets tough at times but I have no choice. Just playing the hand I was delt. Take care and stay healthy.

No. I asked for Prednisone because not only does it help with my breathing problems but also helps with severe sleepiness caused by my Narcolepsy. My Ritalin prescription got screwed up, I didn't notice until I was 240 miles away and had to come home out of meds. I'll have to look up Dupixent to see if it's something I should consider. Thank you!

Yep, the bare minimum is what you get no matter the medication or situation it seems. I'm 60 and grew up with uncontrollable asthma and on very frequent high bursts, as high as 100 mgs of Prednisone. Usually it was 60-80, but no less until more recently. Like you said, it's a total waste of time going in just to end up with 5 days' worth of 20 down to 4mgs of prednisone, I laughed when I saw what she prescribed, thought really? What is this supposed to do for me? And it did absolutely nothing! We have to fight and advocate for ourselves! Remind them we are not all textbook cases, in fact most of us aren't. Some of us have been on the same types of medications for 50, 60 or more years and we know what we're talking about when it comes to what works and how much we need to work. We know our medications!

First thing you have to do is see your pulmonologist. That’s a lot of medication, history and conditions for an urgent care doctor to deal with. I do not like prednisone but from time to time I have to take it, so my pulmonologist gave me a standing prescription with just two or three renewals from my pharmacy for 10 days of prednisone at 20 mg per day. Your doctor might feel differently about you, but I know that when I travel, I take the prednisone with me just in case. Also, as you seem to know, this disease changes over the years. All of a sudden, you wake up, and the bacteria or whatever else you have causing your problems is now resistant to the medication or is changed in some other way