Navigation

Recovery from Pneumonia/Asthma Flare

We returned from vacation two weeks ago, and I had developed pneumonia and had a pretty significant asthma flare that is taking me much longer to recover from than I expected. (I suspect that I had pneumonia for several days before getting home to the dr.) I just finished my third round of antibiotics, tapering the prednisone (on 40 down from 60 with my maintenance dosage at 10), and still doing neb treatments every 4 hours. I have severe persistent asthma, and I am also on the Nucala injection, which is what I credit for keeping me out of the hospital. My pulmonologist said it was just going to take time because I don't recover quickly from bad flares. Fortunately, as a teacher, I have time off to rest, but it is frustrating to spend my summer sick. I went out to dinner last night with my daughter and had to end up going home to do a breathing treatment even though I did one before I left home.

I have been on Nucala for six months and have noticed it has helped significantly with the severity of my asthma (haven't been hospitalized for asthma since starting it), but I guess I *forgot* how long the recovery can be. On the bright side, I do feel better, and I can breathe and talk at the same time. Now, I just would like to be able breathe, walk, and talk at the same time!

45
179

Comments 45

  • K8sMom2002

    Hugs! This is the perfect place to find support and encouragement! Welcome!

    It stinks that your vacation and your summer have been impacted by asthma! And I hate that your time with your daughter had a not-so-great ending.

    It IS hard to give ourselves the space and time to recover from a bad flare. I had pneumonia in May of 2016, and it took me a long time to get back to my baseline. But this group kept me motivated!

    What does your asthma action plan say about having to use breathing treatments in the time space you did? 

    Know that you are not alone … we are here for you!

  • LK

    Welcome Dory2005!     You will find wonderful support here from folks who understand what we are living with.

    I was diagnosed 5 1/2 yrs ago with severe persistent uncontrolled asthma and just started on Xolair several months ago.  I am just starting to see that it is helping me. 

    I am glad the Nucala is helping you.  It takes me much longer, over 6 months, than I wish it would to recover from even a mild respiratory infection.  Until I was fully "recovered" just about anything would set me back and I would have a flare.  For me it is almost harder to deal with the setbacks after I started feeling a little better than when I first had the respiratory infection.

    I am glad you are able to breathe and talk now!  

  • dory2005

    Thank you so much! I can do breathing treatments every 2 hours as needed when having an exacerbation, so it was actually closer to 2.5 hours by the time I returned home.

    I had pneumonia in February 2018, and it took me a month or so before I felt better, but this time, it has hit me harder, so I'm having to adjust to my limitations. I really appreciate the support!

  • dory2005

    Thanks so much for the welcome!

    I've had asthma since I was a kid, so I've been dealing with it for over 30 years, but it was about two years ago that I had such a severe flare that I was put in the hospital, and my diagnosis went from moderate persistent asthma to severe persistent asthma. To be honest, I didn't take it as seriously as I should have because by the time I realized how sick I was, I was in respiratory distress. Never again will I ever  say it's *just* asthma!  

    I really appreciate the support!

  • LK

    I am sorry you had to be hospitalized for your asthma.  Glad you are improving from the latest flare!  It can be a long haul to get back to being close to where we were before a big flare.

    I found these forums last fall and I am so grateful for all the support and understanding I have found here.  I will admit that before I started really learning about my asthma I wasn't taking the necessary steps to avoid my triggers as much as possible.  I just kept thinking that I could keep doing what I loved doing, namely riding and showing horses.  I had never met anyone whose asthma wasn't taken care of with a puff or two of an inhaler whereas mine really didn't improve much by the use of an inhaler.  Before I was the only asthmatic I knew who was one multiple maintenance medicines for asthma.  One problem is that many of my triggers, for example:  strong odors, car exhaust and diesel exhaust, dust, cold air, windy days, etc. are in horse barns and horse shows.  I just kept on because I didn't know enough not to at that point.

    Now I am trying to make decisions to do or not do things which help me breathe well, but it is a work in progress.  

    It is easy to not take asthma seriously until we are in distress.  Sometimes mine sneaks up on me and all of a sudden I need to use my inhaler or nebulizer.   (Well not really all of a sudden it's just that I haven't realized my breathing has been getting steadily worse until all I can think about is breathing.)

    Glad you found us here!!

  • dory2005

    Thanks so much, Lisa! You are so right about how easy it is not to take asthma seriously. I've learned that the hard way. Has your asthma affected your ability to do the things you love (horse shows)? I notice that I have to be more careful about avoiding triggers (pollen, dust, smoke, grass, etc.), which means I can't always do the things I enjoy. 

  • LK

    Unfortunately, yes.  It has means that I am not able to ride or go horse show.  For the longest time I thought I could just go on doing everything as I had before asthma.  Guess I didn't know what I didn't know!      

    It took me months to come to terms with that reality.  The wonderful people here on these forums saw me through those long months last winter.  They understand the impact severe asthma has on one's life and the challenges we face.  

    I used to go to the barn 6-7 days a week to ride and take lessons.  I would go to horse shows, sometimes monthly, mostly out of town.  Most of my friends are horse people whom I would only see at the barn or at shows so I miss that interaction and camaraderie. 

    Sorry for the long spiel!  

    Don't mean to sound so sad because I have a good life!  I am just trying to find that balance between avoiding my triggers as much as possible and being productive.

    Hope you continue to feel better each day!  

  • dory2005

    I'm so sorry that you've had to give it up. I completely understand about trying to find a balance between avoiding triggers and being productive. I'm feeling frustrated because I was doing so well, and this flare/pneumonia has set me back quite a bit, so I'm trying to suck it up and deal with the realities of my life with asthma. I am very thankful that I am feeling some better, and I need to focus more on the positive aspects of recovery. Thanks so much for the support! It really does help to have others who understand.

  • Melissa G

    Hi and Welcome Dory!  

    So sorry you have pneumonia again! I hope you are able to get some rest and you get better soon! 

  • dory2005

    I think I'm starting to adjust to the prednisone taper. Still exhausted but improving a little every day! 

    Thanks for asking! 

  • Kathy P

    I'm glad you are improving! Bouncing back from a flare, and especially with an infection, can take time. I find that the quicker I get aggressive with treatment, the quicker I seem to be able bounce back.

    Do you have a "sick plan" from your doc? I have different things I can add to try to get a handle on things and explicit instructions to call/come in if things don't improve. 

  • dory2005

    Yes, I saw my dr. last week, and we have a plan in place for the taper, but they give me a lot of leeway in case I need to go back up. I can increase prednisone/breathing treatments, and if that doesn't work, then I can call/go in if I start having a bad flare. Several times, I have been able to go in to get a steroid shot (without seeing the dr.) to help with a bad flare, and it helps to keep me out of the hospital. (I've had three shots in the last two weeks.)

    I'm always reluctant to increase the prednisone because I have so many side effects from it (steroid-induced diabetes, osteopenia, etc.), so I normally try to taper down as quickly as I can without causing an exacerbation. It's a love/hate relationship…prednisone helps me breathe, but I look forward to a time when I can breathe without it!

    Thanks so much for the support! 

  • Kathy P

    I hear you on the side effects! I wound up with sinus infection last week – antibiotics and pred. But I also have a broken wrist. So we are having to balance knocking down the flare with bone healing. 

    I have a sick plan that I use when I'm starting to feel a flare coming. I also talk to my doc any time I'm going to travel and have a plan and meds. Then we keep in touch through the portal if things are going sideways. 

  • Shea

    Welcome Dory. I have a tough time coming down on prednisone too. I try to really baby myself during tapers. It is tough. My maintenance dose is currently 20mgs and I haven't had a major flare-up in some time, but I get scared going below 20mgs because every time I do, I end up flaring my whole disease (church-strauss syndrome– asthma is one component of it), then have to start over. Coming down slowly as I approach my m maintenance dose is helpful. I also increase nebulizer during tapers, and really try to be mindful of what I eat and how it affects me. I also have to rest a lot and avoid triggers even more than normal. I hope you you feel better soon and remember there are lots of relaxing activities you can do: movies, books, art.. I always have to remind myself of that.

  • Pljohns

    Dory-I hear you on the awful pred and love/hate relationship.  I hate it-as most of us here do-but it's a necessary evil.  I have found that if I taper REALLY slow, I do much better.  My normal taper from 80mg is about a 8 week taper and it's ugly but it helps with the side effects and so far, I've not had a flare when I'm tapering down.  It sounds like you have a good doc that gives you that leeway-my old one was like that and the new one is OK with shots in the office every other day if I need them but really no guidance to deal with anything so I'm sort of on my own.  Hope you can figure something out to help with the taper.

  • K8sMom2002

    Dory, I hear you on the side effects from pred … this forum has taught me many things and helped me learn how to have a deeper discussion with my doc about what's right for me. And like Lisa, I have learned that avoiding my triggers is a must, even if it's things that I love. I tell myself, "It's for NOW and maybe not forEVER," and give myself and my body time to heal.

    My last bout of pneumonia knocked me down badly and took a lot out of me. I had to be super patient with myself until my lungs could heal. 

    So glad you've found us — hate that you have this disorder, but I can assure you that you are NOT alone and are in good company!

  • dory2005

     

    Kathy: Managing a broken wrist on prednisone can be tricky! I broke my shoulder last September and was on 60 mg of pred for bronchitis, so I can totally relate! I hope that your wrist heals quickly, and that your sinus infection clears up with the antibiotics! Whenever I get a sinus infection, it seems to turn into bronchitis quickly if I'm not careful. That's what started my current issues. I had a sinus infection when we went on vacation, and a week late, I had pneumonia. We probably shouldn't have gone, but we had planned this trip for six months, and I thought I could handle it. (I had antibiotics, increased prednisone, and neb treatments.) I have learned quite a bit from that experience, but we still had lots of fun!

    Shea: It seems like tapering is a tight rope walk. I know that for me as I get closer to my maintenance dosage, I have to be careful. Unfortunately, sometimes my wanting to taper quickly doesn't mesh well with my asthma, so I'm going back up a little. I also have to increase my neb treatments, too. This time, the pneumonia/asthma flare seems to be kicking my tush, so I'm having to rest more than I like, but it's better than being in the hospital. I have to keep telling this to myself because I get so frustrated with myself, but I know that I need to be patient. Still working on the patience.

    PLJohns: I'm having to slow down the taper because of a flare. My dr told me I could go back up if I started having an exacerbation, so I went back up to 30. If that doesn't help, then I go back up to 40. I'm trying to find the lowest dosage that will help manage my asthma. If that doesn't help, I will have to go back in to the dr, but I am hoping that the increase will do the trick.

    Cynthia: It can be so hard to avoid triggers! My husband had to mow the lawn and trim the bushes this weekend, and I'm pretty sure that's what set me off. I have severe allergies to grass, trees, pollen, etc. and it's sometimes impossible to avoid it. Right now, I'm more likely to flare even from the smallest things, so I'm going to have to be more careful. Going back up on the prednisone should help, and as much as I hate it, I need it right now. This pneumonia seems to be worse than the one I had in February. I think it is because we were on vacation, and I couldn't get to the dr for several days. Waiting to go the dr when sick is such a no-no, but I didn't want to go to just any dr 500 miles away from home. Anyway, I know better now! Have you had the pneumonia vaccine? I had it several years ago when I was first hospitalized. I've had pneumonia twice even with the shot. I guess it could be worse without the vaccine! 

    Thanks so much for all the support! This is such an encouraging group! 

     

  • Kathy P

    I something similar in Feb. Had an infection, got antibiotics and pred before leaving for Spain. Seemed to be doing better, but then tanked again! Odd schedule, missed meds, pushing things. It all added up to a mess! 

  • dory2005

    Kathy,

    Exactly!! I pushed myself way too much, and I knew it, but I didn't want to ruin our vacation. I ended up having to stay in the hotel for several days while my husband and son had fun. Sometimes it feels like *asthma amnesia* because I know better than to do it, but I seem to forget how bad an exacerbation can be.

    My mother likes to remind me how sick I get (I've had asthma since I was a kid), and I really hate admitting she was right. 

  • LK

    Dory,  I LOVE your term "asthma amnesia" !!!  It fits perfectly!!  Been there, done that way too many times!!  

  • Shea

    Dory, I know its frustrating having to go back up.. But at the same time sooo awesome to have energy and ability to breathe well again! It is hard to balance chores with asthma too. I hope you go up just the right amount on prednisone to knock out inflammation, and then that youre able to come down nicely– bc with no incident!

  • K8sMom2002

    Dory, BTDT on the "asthma amnesia" … Lisa is right: that's the perfect term for it!

    I hear you and Lisa on how little things that normally wouldn't can set you off. And oh, yeah, on the grass cutting! I try to remember to ask DH (dear husband) to please go straight for the shower and put his clothes in the dirty clothes (for immediate washing!) when he mows grass.

    What sorts of things are you doing already to improve your indoor air quality? AAFA has a great "mini-quiz" on its blog post called . Maybe we can help you brainstorm some more ideas!

  • dory2005

    Haha, Lisa! I think it's how we deal with it, you know?

    Thanks so much, Shea.

    One of my biggest issues is the rapid heart rate that I get from the combo of prednisone and increase in neb treatments. I have a dr appt with my cardiologist Thursday for a check up (I have an arrhythmia but can't take a beta-blocker because of my asthma, so I take a calcium channel blocker instead…it almost took an act of Congress to get my pulmonologist to agree to that.). I'm having to take it really easy right now, or my heart rate goes sky high. Normally, when I taper down and reduce the neb treatments, it calms down. Hoping that will happen sooner than later!

  • dory2005

    Cynthia, I just saw the quiz, and I really hadn't considered the pollen that is being brought into our house and into my bedroom. (Shoes, clothes, etc…) That within itself could be causing me issues! I thought I was being so careful to make sure everything was washed and dusted, but  wow, I'm feeling a little stupid. But at least I'm learning something! 

  • K8sMom2002
    dory2005 posted:

    Haha, Lisa! I think it's how we deal with it, you know?

    Thanks so much, Shea.

    One of my biggest issues is the rapid heart rate that I get from the combo of prednisone and increase in neb treatments. I have a dr appt with my cardiologist Thursday for a check up (I have an arrhythmia but can't take a beta-blocker because of my asthma, so I take a calcium channel blocker instead…it almost took an act of Congress to get my pulmonologist to agree to that.). I'm having to take it really easy right now, or my heart rate goes sky high. Normally, when I taper down and reduce the neb treatments, it calms down. Hoping that will happen sooner than later!

    Yikes on the heart rate … glad you're seeing your cardio! Oral corticosteroids are necessary at times, but they do have side effects … AAFA's doing a survey now on people's experiences OCS: 

    And on the quiz … you are NOT stupid. It's those little things that we don't always think about that can make such a difference. 

    I'm so glad that AAFA puts things together for me so that I can go after the low-hanging fruit and make things better! When asthma looks to be out of control, AAFA reminds me to go hunting for the things I CAN control.

  • LK
    dory2005 posted:

    Cynthia, I just saw the quiz, and I really hadn't considered the pollen that is being brought into our house and into my bedroom. (Shoes, clothes, etc…) That within itself could be causing me issues! I thought I was being so careful to make sure everything was washed and dusted, but  wow, I'm feeling a little stupid. But at least I'm learning something! 

    Dory,  Please don't feel stupid.  It seems like at least every few months I have one of those moments where I notice something I have been doing or not doing that has something to do with one of my triggers.  Like just last week I realized that my shaving lotion makes me cough – it is expelled in a foam from the canister.  I know full well that aerosols and strong scents make me cough but it has taken me how many years to make this particular connection???  Big Sigh.  So I got the razors that already have the lotion on them and I haven't been coughing.

    So please know that we all do it, unfortunately!!  

    You are correct in that at least we are learning!!   

  • Melissa G

    Oh Dory, like others have said, do not feel stupid! We all learn new things each and every day. 

  • dory2005

    Thanks so much, everyone!  I really appreciate the support! 

    Cynthia, I love that idea! Learning to focus on what I can control! That definitely is something I can do! Thanks for the reminder! 

    Melissa, thanks for the encouragement! I will focus on the positive and lessons learned! 

    Lisa, Sometimes it's like I can't see what's right in front of me, and then when I realize it….light bulb moment…so that was my trigger! 

    I think I'm harder on myself because I consider myself an *asthma expert* because I've had it for over thirty years. I've always prided myself on being able to handle it, but when I was hospitalized for it a few years ago and now considered a *severe asthmatic,* I realized that I couldn't just handle it on my own anymore, and that I needed to start taking it seriously. I could really kick myself for letting it get this bad again (I had been doing so well!), but you live and learn! I am fortunate enough to be off in the summer so that I'm not missing time off work (teacher), so I will focus on the positive and getting well. On a brighter note, the increase in prednisone is definitely helping. I went six hours without a neb treatment, and that is the longest I've gone in three weeks!  I am so thankful for everyone here! Thanks so much for letting me vent! 

  • Kathy P

    Don't beat yourself up Dory. We've all been there. We think we have things down and boom! something changes to upset the status quo and we cycle back through relearning. 

    Glad the pred is helping. My sinus infection has stalled a bit since I could only do a short, low dose burst. But I'm hitting with everything else. But frustrated that I can't just knock it down quickly! 

  • Pljohns

    Dory-on the increased pred helping.  I hate the stuff too but have come to realize that it's a necessary evil sometimes.  I'm right there with you on the "think I know how to handle my asthma" but then I get a kick in the pants and realize that I don't.  Unfortunately, for the last year+ I've had to handle it by myself due to lack of pulmonologists in town that will treat asthma.  it's a turf war right now with the primary care docs-the pulmos want the PCP's to handle it and the PCP don't want to touch it and people like me are stuck in the middle with no one.  I finally got a pulmo but don't really like him and have no comfort with him.  He never has suggestions or new meds or anything-I'm always the one that has to suggest or ask to get anything new out of him.  My asthma is difficult to control and tends to go downhill really fast-as he put it-asthma with  a hairpin trigger-and that's about right-so you would think he would stay on top of it but he doesn't.  I hope you continue to improve and don't need nebs often!

  • dory2005

    Ugh, post didn't save! Trying again.

    Melissa, It's a necessary evil, isn't it? I am thankful for it, though. Breathing easier makes such a difference! Thanks for the support!

    Kathy, Thanks for the encouragement! So sorry about your sinus infection. That's what started my current issues. Hope it gets better quickly!

    Lynn, I'm so sorry for your dr. issues! Being your own advocate can be difficult enough, especially since your dr. should be doing that alongside of you! I've been very fortunate to have to have a great team who helped me get on Nucala (allergist and pulmo worked on that together), and it has really helped. Have you been able to try any biologics? Thanks so much for the support!

    Peak flow is slowly moving up, which is awesome! Not quite in my green zone, but better than it was a few days ago! I'm very thankful for all your support!

  • Pljohns

    Dory-so glad you are doing better and your numbers are going up.  I don't qualify for the biologics-most of them target high eosinophyls  (i can't spell today) and all of my labwork is within normal limits.  I have an odd type of asthma-adult onset, non allergic-I've been allergy tested for everything and it's all negative so anything that targets allergens doesn't help me at all.  Right now, there is no medication on the market for this type of asthma so we just throw everything at it and hope something helps.

  • Kathy P

    Hey Lynn – I can't remember, but are your flares often infection triggered? My doc started out testing to see if I was a candidate for biologics. Everything came back within normal limits. So he started looking at immune issues to see if that could explain the constant sinus infections/bronchitis that then caused flares. All my prior sinus CT show chronic inflammation. Low and behold, he uncovered an primary immune deficiency. I don't know if that's a possible rock for you to look under. I see an allergist/I so it was on his radar based on my history .

  • Pljohns

    Oh how I wish Kathy-we already tried that but nothing on the CT AT ALL (including my brain most days).  Mostly my flares are from weather changes and strong scents.  Infections don't always give me a hard time.  thanks for the info-I'm game to look at anything-

  • dory2005

    Lynn, I'm so sorry that your asthma is so difficult to control! I know that the Advair, Spriva, and budesonide (neb) do help me, but it wasn't enough to control it once I became triggered. I sure hope that you can find something to help! 

  • Pljohns

    Thanks Dory-I had an allergic reaction to Advair, I use budesonide in addition to QVAR when I'm having issues and I tried spiriva a while back but it didn't do anything to help me.  There isn't any asthma meds on the market that are LABA's that I can take-had allergic reactions to them all-a couple of them were anaphylatic reactions so I use a COPD neb off label.  I can't use inhalers either-there is something in the propellent that my lungs don't like so I have to use neb for everything except the QVAR and all we've been able to figure out is the steroid over rides the propellent reaction so I can use it.  The new respihaler is much better than the old canister though-I noticed a pretty good jump in my peak flow numbers when I got totally off things with propellents.

  • dory2005

    Lynn, Oh wow! That must have been pretty scary! I've only had an allergic reaction to one med: Levaquin, which was bad enough. I'm on the higher dosage of Spiriva Respimat (the one recommended for COPD), which my dr was able to get my insurance to approve. My 12 yr old son has mild asthma and uses QVAR to help during allergy season.

    I'm sure you've tried all these, but I was on theophylline for 30 years but had to stop it a year ago due to my arrhythmia. It's a really old drug, but it did help me for quite a few years. You have to have your blood levels checked frequently, though. I also take Zafirlukast, which I've been on for years. 

    I'm sorry that the propellents cause you issues. My daughter use to have severe allergic reactions to something (we think it was a combination of make up, perfume, etc.), but all of her allergy testing came back negative. I have often wondered if it was specific chemicals that she was allergic to that they don't have testing for. I wonder if you have something like that. 

  • Pljohns

    We've wondered the same thing-in 8 years, the only sure fire triggers are weather changes, cold air (either AC or wind) and strong smells but it's not always the same smell-sometimes I can pump gas and others not so much.  Rubber will get me almost every time but I'm not allergic to latex

  • LK

    Dory, Interesting that you should mention theophylline.  My dad asked me about aminophylline just the other day.  He asked if it was still used to treat asthma.  I hadn't heard of it but am seeing what I can find out about it.  He still keeps his "ear to the ground" regarding medical information and relates how when he first started practicing medicine (mid 1960s) that if an asthmatic was having a really bad exacerbation they would put him/her under a very deep anesthetic and the pulmonary surgeon would go in and literally clean out the lungs of all the mucus.  At least that is how I recall what he said, so if I've misunderstood please forgive my error!  If anyone has information that makes it clearer, I give him/her the floor!  

    I looked it up on the Mayo Clinic website.  It is a bronchodilator ( I imagine you already knew that!    )  and comes in tablets or solution for the oral route and solution for the IV route.

     

     

    I hadn't heard of either of those meds before.

  • dory2005

    My pulmo said if I didn't respond to the Nucala, another option was Bronchial thermoplasty, which is something I really wanted to avoid!  I wonder if what your dad mentioned is similar to a bronchoscopy. I was able to avoid both, thankfully! 

    Funny story about theophylline:  My PCP told me I was the ONLY patient he had who was on theophylline, so when I finally stopped taking it, he said, "So you've finally joined the 21st century, I see!"  

  • K8sMom2002

    Lisa, my mom was on theophylline … she had asthma and COPD (that's what smoking will do when you're an asthmatic!), but she wound up with glaucoma and needing emergency eye surgery. Her pulmo pulled her off all of her meds (she used controllers) except albuterol nebs and theophylline.

    I hated it for her, and we even sought a second opinion because the meds were helping her so much. She'd finally got to where she could breathe thanks to the improve controllers. But what her doctors explained to her was that they never wanted to be the cause of someone going blind, so they were trying everything else first. 

    But I agree, there are so much more improved meds for asthma now. Who knows what research will help scientists discover in the coming years? 

    Dory, so glad that the pred is helping you get back to your baseline!

    Lynn, you have had a tough time of it … I hate turf wars!

  • Shea

    Wow I learned so much from catching up on these thread posts. I think many chemicals in things like perfumes, rubbers, string cleaning products, and scented products have "lung irritants" in them and any person with inflammation in their lungs are more affected by these irritants than a person with healthy, non-inflamed lungs. When we have flare-ups, we will be even more sensitive. Some of us with allergies– our own body causes irritation and excess mucoys trying to rid ourselves of pollen and irritants, and then colds or viruses will add onto all that. For me personally, it is a combination of avoiding triggers, using steroids to calm the inflammation and allergic response, trying to avoid viruses, eating non-inflammatory foods as best as I can figure out, and keeping the airways open. I do a lot of work on my home since I spend a lot of time at home indoors– and I love the checklists AAFA has!