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Taking Prednisone Daily Longterm

Question for you guys: before you began taking prednisone chronically, how would your pulmos and regular doctors decide when to start oral prednisone? Did they look at you clinically or did they go by a FEV1 or PEF number? I’ve read some protocols and action plans that won’t start oral prednisone until peak flow is 50% of personal best! 😮

for me, we’ve pulled the trigger on steroids when peak flows stopped responding to rescue meds, or by clinical picture (too short of breath to lay down and sustained tachycardia). I know the hope is to avoid systemic steroids, but holy cow, I shudder at getting that low and tight. 

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  • Shea

    When I was at the beginning of my treatment, I had lots of insurance changes and physical moves, and that meant doctor changes. I also was more pushy on myself to get off prednisone. I followed the taper schedules as ordered but when they werent working– when I got low– it took me longer to admit defeat.

    What happened was I was then so inflamed that I had to go way back up because if I didnt get a shot in the butt and start at 60mg, then I wouldn't make it long. Like if I tried to just do no shot and 40mg boost to start, I wouldn't even get to 30mg without deteriorating and it wouldn't be a successful taper.

    Finally, it clicked in my head that suffering and trying to bandaid the inflammation wasnt working (as did my doctors).

    Now, they know and I know, if I have a big flare up to knock that out then wean down to my best maintence dose. My disease typically requires a maintenece dose of prednisone, although some people can get to 10mgs which would be nice– I hear the side effects arent as bad on 10mgs. I am still struggling on 20mgs so I havent tried tapering in quite some time. But I also havent had to go up in a long time and I consider that an important thing because the worst thing for me was bouncing up and down– it is impossible to get into a routine or know your limits when doing that. Stability is important to me and it has allowed me to navigate balance and triggers in a much better way. 

    Also, my immunologist is now looking more at my numbers and trends with them, but not anything rigid with when to go up or down. 

  • Emelina

    Thanks for sharing Shea, sounds like you found the right combo to both beat down acute inflammation and keep the underlying disease under control + done a great job watching out/avoiding triggers!

  • Emelina

    Maybe I can break the questions down a bit more: 

    – burst therapy: how did you and your doctor decide when to do a short steroid burst? Based on clinical impression or a rigid number (peak flow 50%)?

    – chronic therapy initiation: what was the tipping point that lead you to start chronic daily prednisone? Did you max out everything or was it a burst that became chronic? 

    – chronic therapy continuation vs discontinuation: For people on chronic prednisone, what is your weaning plan if any? 

     

    Thanks for humoring me. I’m trying to learn more about steroid dependent asthma, as unfortunately I’ve found myself in this boat (30-40mg is where I’m stuck). My last weaning attempt was less than ideal and I only lasted 5 days before ending up right back on oral steroids.

    I guess what I’m trying to learn is how you all work with your doctor to think about future weans, and if you can get off prednisone, what are the parameters (objective or subjective) that would tell you and your doc you need a pred burst or reinitiation of chronic steroids? 

    I know this is incredibly person dependent, just curious what management plans are out there. Thanks for reading.

     

  • LK
    Emelina posted:

    Maybe I can break the questions down a bit more: 

    – burst therapy: how did you and your doctor decide when to do a short steroid burst? Based on clinical impression or a rigid number (peak flow 50%)?

    – chronic therapy initiation: what was the tipping point that lead you to start chronic daily prednisone? Did you max out everything or was it a burst that became chronic? 

    – chronic therapy continuation vs discontinuation: For people on chronic prednisone, what is your weaning plan if any?  

    Em,  As you say it is very dependent on each person but in my case, my pulmo usually doesn't have me do a short high burst of pred.  He puts me on a daily low dose and has me come back in a few weeks.  Of course, if I am worse I am always told to call and they will get me in to see him and then we go from there.  It is based on my spirometry but mainly on how I am feeling since my numbers are not a good indicator of how my lungs are really doing.  Even when doctors listen to my lungs they always say there is no wheezing.  Thankfully my pulmo also listens to how I am feeling breathing-wise.

    Since I am on high dosage maintenance medicines for asthma and GERD, if I have a flare that just doesn't resolve with my rescue inhaler or nebs, then I call him and he usually wants to see me and then adds pred.  I have been with him for six years so he has a good understanding of how my lungs behave or don't behave as the case may be!

    When I would be at an appointment and ask how much longer I would be on pred, he would just say we will see at my next appointment in a few weeks.  Guess he either didn't want to get my hopes up or didn't want to dash my hopes if it didn't work out.  At my last appointment a few weeks ago it was the first time since I started on pred last fall that he even mentioned lowering my dosage.  Went from 10mg daily to 5mg.  On that until my next appointment in a few weeks and he said hopefully at that point I can get off it.  That has only been since I have been on Dupixent.

    Hope this helps!

  • Emelina

    Thanks Lisa! That is wonderful that you have found a really good pulmo who listens to how you feel plus the numbers. I think it’s tough for docs when they meet a cough variant asthma patient. Every doctor who has ever cared for me always seems surprised when they listen to my cranky but usually quiet lungs. It’s interesting, i was taught to be careful … all wheezes are not asthma (cardiac wheeze, vocal cord stridor) and not all asthma wheezes! I think I had some wonderful teachers. There are rules of thumb … but more importantly, exceptions to every rule of thumb!

    I didn’t think we were that rare, but I’m beginning to think we are part unicorns. 

    Thank you for giving me food for thought. Just trying to gather more knowledge and understanding about how others use prednisone. I’m still dreaming about the day I can toss the prednisone bottle in my closet. 🤞but in the mean time, I’m still grateful it works and has given me some normalcy back. 

  • Deborah Bartlett
    LK posted:
    Emelina posted:

    Maybe I can break the questions down a bit more: 

    – burst therapy: how did you and your doctor decide when to do a short steroid burst? Based on clinical impression or a rigid number (peak flow 50%)?

    – chronic therapy initiation: what was the tipping point that lead you to start chronic daily prednisone? Did you max out everything or was it a burst that became chronic? 

    – chronic therapy continuation vs discontinuation: For people on chronic prednisone, what is your weaning plan if any?  

    Em,  As you say it is very dependent on each person but in my case, my pulmo usually doesn't have me do a short high burst of pred.  He puts me on a daily low dose and has me come back in a few weeks.  Of course, if I am worse I am always told to call and they will get me in to see him and then we go from there.  It is based on my spirometry but mainly on how I am feeling since my numbers are not a good indicator of how my lungs are really doing.  Even when doctors listen to my lungs they always say there is no wheezing.  Thankfully my pulmo also listens to how I am feeling breathing-wise.

    Since I am on high dosage maintenance medicines for asthma and GERD, if I have a flare that just doesn't resolve with my rescue inhaler or nebs, then I call him and he usually wants to see me and then adds pred.  I have been with him for six years so he has a good understanding of how my lungs behave or don't behave as the case may be!

    When I would be at an appointment and ask how much longer I would be on pred, he would just say we will see at my next appointment in a few weeks.  Guess he either didn't want to get my hopes up or didn't want to dash my hopes if it didn't work out.  At my last appointment a few weeks ago it was the first time since I started on pred last fall that he even mentioned lowering my dosage.  Went from 10mg daily to 5mg.  On that until my next appointment in a few weeks and he said hopefully at that point I can get off it.  That has only been since I have been on Dupixent.

    Hope this helps!

    Lisa, as I read what you had written, I had the Dupixent in mind. Look at the difference! 😀

  • Deborah Bartlett

    My doctors go by my general state of health. They listen to my breathing and if I cannot take a deep breath without wheezing and coughing, then it's back on Pred. They really don't want me on it. Long term horrible side effects! Looked like I had a good chance of being on Pred for life. Now, I may need further testing to see what is going on with th asthma aspect of my illness. Last time I was off Pred, I was back on in 2 weeks. I can't get up the stairs without running out if breath off the Pred if my general state if health is down. 

  • Pljohns

    Em-Thankfully I don't take pred chronically but for me, the doctors have always told me to add the extra nebs every 4 hours around the clock, add the second inhaled steroid around the clock and if that does't help, hit the pred.  They don't so much go by numbers for me but they do ask what they are-for me, it's more about what all I've added and am still not getting better, or am getting worse.

  • Emelina

    Thank you Debbie and Lynn for sharing your experiences. It’s interesting how we are all slightly different but similar. It is nuts too how the research doesn’t give hard and fast numbers for length and durations of bursts/tapers because it is all so individual. 

    I’m a bit heart broken that the IgE was low and Xolair is out for now … I don’t like the side effects of prednisone at all, but know it’s doing an important job. 🤞 that there might be something else out there, or maybe a trial of azithro or another option! Thanks guys for helping me understand how you all use prednisone. Appreciate it! 

  • K8sMom2002

    Em, a good doc is going to look at your whole health picture and help you decide what is the best thing for you at this moment in time. And there is so much research going on now, and so many more options than there was at one time. If not Xolair, then would one of the other biologics be a good possibility?

    Also, remember that your lungs take a while to get back to baseline. After my big flare that ended in a not-so-lovely case of pneumonia, it was nearly a year of work for me to get back to where I was. So can you be kind to yourself and give yourself and your lungs permission to heal? Can you ask your family to give you that time as well? 

  • Emelina

    Hi Cynthia, you bring up great points. Thanks for your thoughts and wisdom! There are definitely more biologic options out there, I’ve heard my docs mention the IL5 drugs like nucala. My insurance company is a real peach and I’d heard xolair was easier to get approved for. I’ll keep my fingers crossed and ask about the other options at my upcoming appointments. It’s tough, I love what prednisone does, it’s the only thing that has really reliably kept the symptoms at bay, but I’m definitely seeing more of the physical side effects so, time to hunt for an alternative.

    Good point as well about giving one’s self time/space to allow full recovery I keep reminding myself, this all got started worsening in October … so if it took months to get here, don’t expect an overnight return to that spot. My family has been super understanding. I think it was tough for dh after my first hospital stay – tough for us both really. We both expected a fast turn around. But after the second Illness after jumping on the bandwagon, I think we both have a better idea of what recovery will look like (slow and steady) and more realistic expectations. I’m happy just taking it one day at a time.