Tag Archive for prednisone

More prednisone

Things were starting to get better for me the past few weeks as I saw my daily prednisone intake once again drop to 20mg and then 10mg.  I tried not to think too hard about getting off this love/hate drug as this whole summer I would get off this steroid only to get back on it or need to up my dose when it became too low.  Things almost seemed different this time and I thought I might actually get better before “Fall” hit.  I was wrong.

The weather started turning, mold counts were becoming ridiculously high and then the dreaded combining/harvesting began.  Living in the Midwest means you’re probably close to some form of agriculture, but I’ve always lived in sight, if not immediately next to fields.  When the harvesting begins there is a thick cloud of debris and dust that fills the air almost looking like smoke or dense fog.  All this stuff doesn’t really help anyone breathe, let alone someone like myself with respiratory issues.

I watched my peakflow averages drop 20-30% and my oxygen levels were consistently getting lower.  It wasn’t really until this past week when I passed out from my oxygen becoming too low that I realized I couldn’t keep ignoring this.  Liz really wanted me to go to the hospital, but I somehow convinced her not to take me.  I instead opted to get a hold of my PCP the next morning who got me a Kenalog shot and upped my prednisone taper from 5mg/day to a 40mg taper.  I think I’m experiencing side-effects of Cushing’s syndrome, but it’s nothing I haven’t been able to deal with so far.  The worst for me is lack of sleep and inability to think clearly most of the time.  I’d really love to stay home from work and rest, but I can’t afford not to work and the FMLA stuff is a much bigger pain for me than it’s ever been in the past.  Liz stopped by with Chuck the other day at work and took a picture of us.  I was a little shocked to see how awful I looked and that was me attempting to be cheerful.  As much as I try to hide how bad I feel, it’s obvious I’m not doing great.  I just keep checking my O2 and peakflow numbers when I feel worse because the last thing I need at work is to fall down, pass out or go into a full on attack.  It would really freak some people out.

My local pulmonologist has been saying I could be on a maintenance dose of prednisone for a long time.  I was really hoping that wouldn’t happen, but it’s starting to look more like a reality.  I emailed my new lung doctor to update on what’s been happening and she apologized for suggesting I taper as quickly as I did, which my local doc agreed to.  It’s not like it’s her fault and this occurred over the course of a month, not a week or days.  I’m heading back to Pittsburgh in a few days.  While I’m still on the dreaded drug, it is less than I was last visit.  Hopefully I can get some suggestions on treatment or ideas as to anything else that could be ailing me.

Prednisone test

Today my prednisone starts tapering again.  This will be a test to see if I’m really improving or not.  So far I’ve stayed out of the hospital for just over a week, but I’ve also been on a high dose of prednisone for eight days.  Over the summer every time my taper has dropped down to a certain point everything flares up again.  There are some good signs though like I’m starting to sleep again and feel tired, and my voice is also sounding slightly normal.

I had the chance to consider returning to work this week but decided not to.  It’s just not worth it.  I’m still not able to be up on my feet all day.  Just doing what little around the house still leaves me worn out and exhausted.  I’m continuing to have bad spells at least once a day and I know just walking and talking at work would be detrimental.  I need to return ready to work, not dragging myself around and panting like I just ran a 5K.

My albuterol use has also decreased, which is wonderful.  I did over 200 neb treatments last month alone and would love to eventually get down to just four a day in the next couple weeks if possible.  For now I need to continue focusing on resting up, doing appropriate amounts of physical activity every day, stay on top of my school work and be ready for SARP.

New treatment options

Since I last saw my pulmonologist I’ve been in the Emergency Room four times and admitted once.  First thing out of his mouth was, “Wow, you’ve had a rough two months!”  We talked about what’s been going on, symptoms, how the meds are working, prednisone, etc.  Dr M said it was obvious every time my taper gets down to a certain level everything flares up again.  He said I basically have three options.

  1. Go to an asthma clinic and get a full work-up.
  2. Look into bronchial thermoplasty
  3. Become steroid dependent

I first heard about bronchial thermoplasty three years ago.  They’ve been doing it in Europe for a while and FDA has approved it for use in the US.  The quick explanation is they scope a wire down into your airways using radio frequencies to heat up and burn away extra tissue.  This assists with the extreme swelling and inflammation many of us asthmatics deal with on a regular basis.

Steroid dependency is needing a small dose of prednisone or another steroid on a regular basis.  This is different from using inhaled corticosteroids as an inhaled maintenance medication.  I’ve been on prednisone 80 some days already this summer so continuing would be an easy step.  Dr M would rather not have to resort to that right now at my age, but we’ll see.

Dr M was really intent on option #1.  He talked about some of the different centers in the area and how beneficial it would be.  He welcomes second opinions and would like to consult to make sure he, Dr K and Dr J are all on the same page with treating me.  He was all ready to call up the Cleveland Clinic and get something scheduled when I finally had the chance to inform him I’m heading to Pittsburgh in 10 days to participate in SARP and see Dr W.  Dr M likes that I try to stay on top of things.

So for now we’re going to see how Pittsburgh goes and what they find.  I’d rather not stay on prednisone forever, but it’s better than visiting my friends at the ER every week and much less drastic than the bronchial thermoplasty.

Summer 2013: ER Trip #5

Deciding To Go

This whole past week hasn’t been good with night time PF readings constantly dipping into the 300s.  My daily breathing treatment count slowly climbed to 10 by Thursday and I was once again being seriously asked if I needed to go to the hospital.  Of course I probably should have, but I really didn’t want to and had a case of the asthma-brain influencing my decisions.  I figured I’d go the cheap route and call my doctor yesterday morning to bump up my prednisone taper or something.  An email, I love that some doctor offices let you email them, to my primary care physician resulted in a quick reply that my doctor was not in today and suggested I contact my lung doctor.  While some might think I was blown off, the response was actually quite reasonable.  I still haven’t followed up with my lung doctor since I was hospitalized and they’re the ones that finally got me back on track in July before the drywall dust debacle at work last month.  So I left a message at my pulmonologist’s office, you can never actually get a person on the phone it seems, and waited.  I waited all day long and then ended up back in the ER.

It’s hard to describe, but unless I encounter a severe, unplanned trigger or circumstance – I can tell when I’m going to have a day bad enough to result in an hospital trip.  I kind of had that feeling Thursday and I definitely had that feeling Friday morning.  It’s that whole gut reaction thing.  I hadn’t slept for several days, but did get a couple hours sleep in mid-morning.  The sleep helps, but when you miss a scheduled breathing treatment, I’m not always sure which is worse.  Chuck and Liz got home just after 5 and Chuck really wanted me to play with her.  That’s about the time when the meds stopped keeping the symptoms at bay.  A good friend of ours brought over some amazing chili and corn bread for dinner.  We ate, Liz told me to go take more medicine, we hung out and watched some of The IT Crowd.  I was back into the cycle of PF at 400 or below, neb, get back up to 500ish and then slowly drop back down.  During this time I was noticing my O2 getting to 93, which isn’t bad, but also isn’t good, and when I’d start panting for no good reason I knew I had to keep an eye on things.

Around 11:00PM, PF values were at 350 and below.  I went ahead and told Liz and decided to re-evaluate myself at midnight.  An hour came and went.  I did everything I was supposed to and took all my meds, but my numbers were still the same.  It was time for ER trip #5.

I feel bad for Liz.  Yeah I have all the breathing problems, yeah I go for days without sleeping, yeah I’m on tons of drugs and am always getting stuck with needles – but I do all this while often getting to forget about normal day-to-day life.  Liz still has to go to work and teach, she ends up taking care of Chuck 90% of the time and that’s on top of everything else normal people do and take care of in their daily lives.  So while I’m feeling awful and need a ride to the Emergency Room, Liz, who is already tired, knows she’ll be up until at least 4am, will most likely be wrangling our daughter tomorrow AND has work obligations in the morning.  I think the Coen Brothers’ Nihilists say it best, “it’s not fair!”

Getting Treatment

Another quick PF check clocked me at 320, Liz’s mom came over to watch Chuck and I sloth’d my way to the car with asthma gear in hand.  Thunder had just started on our way out and I wondered how many other asthmatics we’d encounter.  With the high heat, insane ragweed/pollen counts and now a thunderstorm rolling in – I knew us lungers would be out in force.  The trip there was pretty easy since traffic dies way down after midnight.  When we pulled up to the ER entrance there was a less-than-smart citizen smoking a cigarette immediately next to the entrance.  While I would have loved to share my thoughts on all the no-smoking signs staring at the guy, I shuffled as quickly as I could into the building without breathing in the poison.  Before I knew it our friend from registration was telling a guy who I was cause she knows I can’t talk right when coming in.  I scribbled my name on a piece of paper, tried to answer a couple of questions to someone else, and they wheeled me back to a room.  Haley even came back later and got Liz some Subway.  All I have to say is it pays to know people.

Usually I get stalked back to the room by several people but today was the exception.  I lumbered off the wheelchair and onto the bed, was given a gown and the triage person left.  Remember me wondering how many other respiratory patients would be in there today?  Well there were a lot.  Ten minutes go by and someone from radiology showed up with a portable x-ray machine to perform a chest scan.  Liz told her it wasn’t really worth getting an x-ray right now because respiratory hadn’t even started meds yet.  I’ve had this happen before and when my airways are so tight, I can’t really breathe in enough for them to get a good image.  Five or ten minutes later you would have thought I’d just finished a marathon by the amount of sweat rolling off me because breathing can be hard work.  Another PF check showed me now at 260 so I decided to just start a breathing treatment of my own.  It really does pay to carry your own medicine with you.  Half way through my own meds, the room nurse came by assuming respiratory had started their thing from the noise of my nebulizer compressor.  She immediately put in another call to see where they were, got an IV started on the first try (last two trips took 4 pokes each), and set me up with 2L of oxygen.

The respiratory therapists, two this time, came by and were surprised to see me medicating myself.  They hooked me up with a couple duoneb treatments, listened to my lungs several times and relied on Liz for information.  Apparently I was really making their day because the main one announced they should go buy lotto tickets.

  • I knew my baseline, historical and current Peakflow information
  • I brought all my meds as well as had them listed on paper
  • I use a spacer
  • I’m compliant with my medications
  • I write down all meds taken and any circumstances surrounding my breathing
  • I had a fairly good idea of why today required me to come see them

They even asked if I had considered running a seminar on how to be a good asthma patient.  As usual one of the first comments was, “well I’m not really hearing any wheezing,” but they were surprised at how little air I was moving.  Liz quickly informed them of my general symptoms cause she’s awesome.  X-rays came back again to get that chest scan and Liz heard the therapists out in the hallway talking about how I don’t really “seem asthmatic” at first glance but I’m obviously a severe.  The respiratory therapists came back in to give me a 3rd treatment, but wanted my opinion on it since I had done nine in the previous 24 hrs and three more in the past hour.

RT: Here’s the deal, I think you could use another one, but I’m kind of concerned with your heart rate and the side effects.  What do you think?

Me: Let’s hold off for a bit and see what happens.  I’m already moving a lot more air.

After seeing my PF has gotten up to 450, they decide to go ahead and let me hold off for a while.

RT: We’ll check in with your doctor and see what he thinks.  I’d give you more medicine, but they only let me neb you 3x before a doctor gets involved…cause I’m just a lowly respiratory therapist.

Me: Yeah, and I’m just a lowly patient.

The Doctor

My doctor rolled in and right away I could tell there was something different.  On a rare occasion I encounter medical professionals too cool for school who want you to know they have it together.  They’ll say lots of big words, not really let you answer questions and walk out leaving you with more questions than before they arrived.  Dr C was not this kind of doctor, he was actually kind of awesome.  He had obviously looked through all my info.  He knew I had been there 4x prior, he knew I was on all the medications you would normally prescribe, and he knew I wasn’t your average asthmatic.  After discussing my medication, treatment and brief history the conversation quickly turned to something more interesting.

Doctor C: Have you guys by chance heard of RadioLab?

We then discussed that guy who gave himself tapeworms to cure his horrendous allergies and asthma.  While all three of us thought it was great the dude cured himself, Dr C wasn’t exactly endorsing the act of purchasing worms someone has harvested from their own feces.  After we had a good, well as much as I could muster, chuckle about infecting oneself parasites, the topic of conversation quickly switched to my Maxpedition Jumbo Versipack, aka the Asthma Bag.  I don’t know why all the medical people who see it thinks it’s so awesome.  Kind of makes me feel cool just to have it.  Doctor C picked it up and examined it thoroughly.  He really dug my setup.

So what to do…Doctor C was concerned with my O2 levels.  He also asked about other non-standard treatments they sometimes administer to avoid intubating.  My oxygen saturation usually registers pretty high in the 97-98% range.  After I had another breathing treatment and things settled down a bit, Doctor C took me off the nasal cannula to see who everything looked.  I did dip into the 80s briefly, but mostly stayed at or just above 92%, which was the defined line.  I was glad to not get admitted again.  I would guess we probably spent 20 minutes or more talking candidly with the doctor.  At no time was he acting like he needed to be somewhere else or one of his other patients in the ER that night was more important than me.  Interestingly I later popped his name into Facebook and discovered we not only graduated from the same university, we have cool Facebook friends in common.  Small world.

The Aftermath

One great observation the doctor made was when someone like myself is on prednisone, the taper really shouldn’t end until several days AFTER I’m doing well.  I did finally achieve that back in July but then had another setback with the construction dust flare-up.  So my taper’s back up to a “big boy” dose and I’m fairly confident I’ll be ok through the weekend until I can follow-up with my regular doctors.  The salumedrol is probably the most effective medicine I get at the hospital which I cannot give myself at home.  It’s a corticosteroid, similar to prednisone, administered through an IV.  I’ll be good for a couple days on that alone, and the extra oral prednisone should boost me the rest of the way.

This further cements in my mind the need to participate in an asthma research study.  I’m looking forward to beginning SARP III next month.  I’ve also been wondering if I should be nebulizing any other medications.  I’m already taking Spiriva, but maybe something like scheduled DuoNeb treatments supplemented with Albuterol treatments would be more effective?  Definitely something to talk about with the various doctors I’ll be seeing in the next few weeks.

Lastly I must mention the traditional drive through Taco Bell.  The hours of labored breathing can really work up an appetite.  I finally tried one of the new Fiery Doritos Locos Tacos.  The Nacho Cheese variety is pretty decent, but I was really disappointed with the Cool Ranch.  There just isn’t a strong taste to wow me into believing I’m eating an amazing Doritos-Taco Bell food combination.  To be fair Cool Ranch Doritos don’t exactly have an over-powering taste on their own, but I feel it should be stronger when combined with a taco.  The Fiery version takes the cake for me.  It has a big, bold flavor that improves upon the standard Nacho Cheese.

doritos_locos_tacos

Do you need to go to the hospital?

This is the question my loving wife has been asking me about 1-4 times per day for the past….3 months or so.  I was telling a friend just the other day I’ll know this summer of asthma hell will be over when I haven’t heard “the question” for a few days.

This summer all started back in May when I had what I’d call a “flare up.”  One thing led to another, I caught a few bugs, overdid it way too many times, encountered drywall dust from construction in my workplace and I keep hearing this is the worst allergy season ever.  Just this past week I was starting to get better and then took a turn for the worse with a fever.  The doctors thought I might have pneumonia, which scares the crap out of me, but fortunately the chest x-rays came back clear.  That probably sounds like great news, which it is, but I’m still on Levaquin, more prednisone, doing 7-9 nebulizer treatments a day and generally feeling like crap on top of my 13 other maintenance and emergency medications and treatments.

Today marks day 62 of prednisone this summer and went something like this…

  • I actually felt tired around 3am and got about 5hours of sleep – first time I’ve slept in about three days.
  • Upon waking up and feeling proud that I’m no longer a zombie, I immediately realize I haven’t had a neb treatment in 5 hours and feel like I’m chasing symptoms all morning.
  • By around 2pm things start evening out and I’m actually able to walk around the house without feeling like I’m going to fall over and try to entertain my daughter to give my wife a break.
  • Dinner time rolls around and some family stopped by to eat with us.  I was starting to feel a little lousy but wanted to make the effort to sit at the table for a meal ( you know, just like in the Spiriva commercials!).
  • After dinner I started to help clean up, take care of dishes, etc when I started to feel bad.  My wife told me if I needed to take a break to do so.  I lounged on the couch and tried to chill.  This is when I realized my pulse was around 105 and my O2 sat was at 93% so I did another neb.
  • Fast forward about 45 minutes and for apparently no reason I’m at 88-89%, PF is at 320 and my pulse is a solid 115 all while I’m about as chill as a Buddha statue.

Now here is one of those several times where I was asked, “Do you need to go to the hospital?”  The normal answer would be, “yes please,” but I’m not normal.  For some reason I have to live on the edge…that and I don’t always make good decisions when I can’t breathe.  In the back of my mind I had a feeling this wouldn’t last too long, and thankfully it didn’t.  I also just hate going to the ER cause it’s never fun and it’s like I’m admitting defeat.  After about 90min I was able to stabilize myself into the 93% range and my PF was up in the 400s – not great but also not in the need to go to the ER realm.

So tonight I’m once again out on the couch watching movies (Alien anthology tonight) as I continue monitoring my numbers and promising to wake up Liz  if things get bad.  I did happen to come across a cool blog with lots of great stories which is giving me something to do.  I’m not nearly as bad as Stephen, but I can definitely relate.  It’s not often I come across people on the internet writing candidly about severe asthma and always appreciate it when others are wiling to share their stories.

Acute flare-up day 68

Back in May I wrote about being on day 29 of an asthma flare-up.  I’m now 1/3 of the way through July and today marks day 68.  June was definitely the worst of it with two hospital visits, and by this Thursday I will have been on prednisone for 49 days, which I’m pretty sure is the longest stretch I’ve ever done.  I’m not completely confident I’ll be ok once I’m off of it, but we’ll see.  I’m still doing 3-4 nebuilzer treatments every day and having to take it easy.  Just walking outside from a building to a parking lot in 85 degrees with humidity still wears me out quickly.  The hardest part is still just pacing myself.

Friday I was able to attend the wedding of some friends.  They kept things simple and low key, which is different from many weddings I’ve attended.  People seemed less stressed.  There were a lot of Doctor Who references, some Game of Thrones references and a homemade crossword puzzle that our table knocked out in record time.  I wasn’t feeling too great afterward and spent the weekend taking it easy, but I was glad to get out and do something social.  I think the best part of the night was when I noticed a spider on my friend’s suit, which I promptly flicked-off.  The thing flew across to the other table and landed on/near a woman who seconds later was looking around wondering where that spider came from.

One thing I have been persistent on is riding my bike whenever possible.  Exercise is an important part of respiratory health and keeping the lungs in good working order.  Even if I’ve been lying around all day, 20-40min on my bike can make a huge difference.  Back in the day I used to go running all the time, I’m in no condition to actually do that right now but maybe I’ll work my way back to it.

Calling in re-inforcements

After my 3rd PCP visit and kenalog shot, I got a call in to my pulmonologist’s office about an acute visit.  Unfortunately my rock-star lung doc is on some much needed vacation and fortunately I was able to see one of the NPs this morning.  They aren’t sure exactly what’s going on, but I’m at least being taken seriously.  After I finish the ER Z-pack, I’m starting 10 days of Levaquin, and my prednisone taper is being extended and lowered by smaller increments.  Next week they’re going to monitor my oxygen saturation at night to make sure the CPAP is working properly.  I think I have enough prednisone now to start my own pharmacy.  I’m just hoping I can continue to get at least a tiny amount of sleep.

On my outing today:

  • Had to stand in line for check-in at lung doc while the receptionist gossiped on the phone and kept another old woman with oxygen tank waiting
  • Another old woman, with oxygen tank, cut in line while I was waiting to check in
  • Some maniac in a Cadillac slammed into a Suburban while crossing 2 lanes coming within feet of my car and hitting another car in the hospital parking lot
  • I got lots of stares at Taco Bell while getting some tacos for lunch
  • I had to stand in line at CVS for about 20 min
  • A woman cut in front of me to buy M&Ms cause they’re more important than my prednisone
  • Some other dude tried to cut in front of me just because
  • I thought I wasn’t going to be able to walk out of CVS without sitting down for five minutes

I’ve had a rough morning and I still hate The Eagles.  Four puffs of maxair, a double abuterol nebulizer and an hour of sitting have helped a lot.  I think it’s time to start a movie.

No one likes a braggart

So I had been slightly over-impressed with myself for making it through this March without any major pulmonary incident.  The Ides of March slipped past with no hemoptysis, and I seemed to be well on my way into the summer of “the worst allergy season ever” without many of the symptoms I keep reading about on Facebook.  I saw my pulmonologist at the beginning of May and things seemed ok.  My lung function was slightly down from last time, but I seemed to be holding my own…and then it started.  The flare up that that required me to inhale 61 nebulizer treatments last month, and take two unsuccessful rounds of prednisone.

I think Rick James says it best – Prednisone is a hell of a drug.

My first course of steroids was five days at 50mg.  That kind of quick punch can usually get me back on track if I’m not too bad.  I started feeling better, but went downhill immediately after.  Round two started as a 15 day taper which got me feeling better on day two only to start getting worse on day three.  Day four ended with a coughing fit on the floor after unsuccessfully attempting to get up off the couch and walk 20 feet after Game of Thrones.

My ever-awesome wife got me over to the preferred hospital in town post haste.  They saw me coming and greeted me with a wheelchair at the check-in counter to immediately get an IV started for salumedrol.  I have to laugh sometimes when I hear people complaining about emergency room visits and waiting hours for treatment.  Whenever I show up, I get the platinum club treatment.  Liz says they had people hovering over me like the time I had pneumonia, the big difference being my oxygen saturation stabilized without too much effort.  I was able to leave after not too many hours, avoided a hospital stay and celebrated with Taco Bell.  My prednisone taper was replaced with a much stronger dose and started some anti-biotics.

Yesterday I started feeling much worse again after all those IV steroids wore off, but was able to keep things under control with the nebulizer.  This morning I followed up with my PCP and the nurse told me I look like shit.  That was followed with, “will you slide your shorts down please,” and a shot of Kenalog into my posterior.  That empowered me to get a lot of work done at home today, but I’m sure I still come off as a crazy person who hasn’t slept for days.

My pulmonologist is out of town, but I have an appointment with his NP later this week.  A buddy of mine asked if I’ve ever thought about getting totally checked out at one of the big pulmonology centers in the country and that’s actually not a bad idea.  Fortunately I really like my lung doc here, he was totally in my corner before we moved and still is now that we’ve moved back.  It often seems like there’s still something not yet diagnosed with all the problems I have.  It’s been a couple years since I really pushed for some answers, I think there are still more out there.

Acute flare-up Day 29

My efforts to post daily have been thwarted by another asthma flare up.  Fortunately I’ve stayed out of the hospital so far this calendar year, but there were a couple times in the past weeks that I should have visited the ER.  I’m currently on my second round of prednisone and feel like I’m riding the Crazy Train.  The good news is I’m actually starting to feel better and I’m lucky enough to have a job that allows me to do work from home.  If you’re also suffering from asthma right now, here are some tips to get better more quickly.

  • Rest – it can be hard to just do nothing, but sometimes that’s what you need to do.  It’s not always possible to stay home from work or have someone else take care of things, but try to at least slow down.
  • Lots of fluids – water is important by itself, but can really help make a difference for asthmatics.
  • Avoid irritants and allergens – try staying in doors and limit outdoor activities.
  • Seek medical attention if necessary – when my oxygen saturation gets low, I acquire something called “asthma brain.”  I can’t seem to think clearly and make poor decisions.  Make sure there’s someone around to check up on you and don’t be a hero.  See the doctor if necessary.

I’m hoping to make a full recovery soon because I have a film festival to attend in July.  The Dude abides.

Candy for big kids

Remember way back in the day when you’d go to the doctor and get a sticker, sucker or what have you?  Well about about us big kids?  What do we get?  Tonight I found out what it takes to earn a Taco Bell Beefy Melt Burrito $5 Box.

  • 10 or so puffs on a rescue inhaler
  • 7 nebulizer treatments
  • 1 Z-pack
  • 85mg prednisone
  • a couple muscle relaxers
  • anti-anxiety medicine
  • codeine cough syrup
  • a 4hr coughing fit
  • continually turning purple
  • and my 3rd trip to the ER this year

Is it worth it?