Tag Archive for prednisone

Prednisone Burst

My lung doc finally gave in and subscribed me some prednisone today. I’ve been feeling bad for about a week. The weather is changing, allergies are bad, one of my kids is kind of sick, and they’ve started harvesting corn. It could be just one, several, or all of those reasons why I’m having trouble breathing. Monday my blood-oxygen saturation kept dipping below 90%, and every day this week my PeakFlow numbers have been steadily dropping. While I really dislike systemic steroids and their side-effects, Liz reminded me it could be worse.

The last time I was admitted to the hospital I had been on 80mg of predisone daily. They gave me two, 120mg IV injections of solumedrol, and then admitted me into a room where they showed up every 6 hours for another 120mg of solumedrol. Some of the side-effects include:

  • It made me a little crazy
  • I became temporarily diabetic and required insulin
  • I retained water and gained weight
  • I developed cataracts
  • I lost muscle tone
  • I couldn’t sleep
  • My hands cramped up
  • My cognitive abilities were diminished
  • I got cranky and moody
  • My vision became blurry at times (probably due to the increased blood sugar levels)
  • My face became round and puffy
  • I lost my appetite

I had been on prednisone for most of the previous 2 years leading up to this hospitalization. When you’ve been on prednisone that long, you can’t just quit. You must be tapered off because your body is somewhat dependent on it. I’m not sure exactly when I developed hypothyroidism, but it was sometime after this long period of time on the medicine. If you want to see a long list of known effects, check them out here.

One of my lung doctors has told me multiple times the prednisone would kill me before the asthma if I couldn’t find a better way to treat my asthma. I’m happy to say this is only the second time in the past 6 months I’ve had to resort to this treatment. I’m hoping the short burst will get me back on my feet.

August

Well, it’s my *favorite* month of the year and 2015 is similar to the rest. There are some bright spots though, I haven’t been in the hospital yet this summer, my meds have been tweaked to a decent combination, and I have an appointment with a VCD specialist next week. I’m currently on my 3rd prednisone taper since July and my lung doc put me on some anti-biotics today. I’m hoping I can buck up over the weekend and get back to work on Monday. I’m hoping I can weather out the summer and then have a decent winter and spring. We’ll see what happens.

Summer 2014: ER Visit #3

Just as I had predicted the day before, it’s August and I’d probably end up having an ER trip.  I just didn’t think it’d be happening so soon.  Three days in a row I was exposed to some sort of smoke and the third time apparently worked.  A racetrack several miles away was having a special event that night where they were attempting to make as much carbon pollution as possible.  The result of said event made my entire neighborhood, several miles away, smell like burning tires.

I gave it almost a couple hours before deciding to throw in the towel and admit defeat on this one.  On the way, Liz said,

I’m sorry for making you go to the hospital.

She knows how much I don’t like going there, even though I get the help I need, because it tends to set me back a bit with work and other things.  For example, I’ve been awake close to 2 days now.  That’s what happens when I’m injected with solumedrol and my prednisone dose is greatly increased afterward.

We were surprised to see the place so empty on a Saturday night.  I never really have to wait, but that just means they get to me even faster.  Recently a friend of mine blogged about how emergency treatment protocols for asthma seem to have changed.  I’ve noticed some of the changes myself.  As usual I was having trouble talking clearly and being understood so Liz was able to answer a lot of questions for them.  I think this was the 4th time I had seen this particular respiratory tech, and she totally remembered me, so a lot of the initial questions were just confirming medical history and medications.

They checked on me fairly often because I wasn’t able to move a lot of air when I arrived, but the treatment was pretty identical to my other two trips this year.  One duoneb treatment, followed by listening to my lungs and checking O2 sat a while later, followed by 125mg solumedrol, see the doc, and then go from there.  I can always tell how much the doctor has read my chart by how the conversation goes with him or her.  I know this doctor hadn’t read much at all.  She told me I was moving more air, sounded ok, x-rays looked ok, and she was going to “send me home with steroids that’ll make me better in a couple days.”

I’m fairly familiar with prednisone as I’ve been taking it off and on for years.  In fact, I’ve been taking it every day for the past 15 months.  I’m also on every type of maintenance medication they give to asthmatics including xolair.  That and the fact I’m prednisone dependent gets me labeled as a severe asthmatic by many.  When doctors have read all this stuff they usually want to have a 10-15 minute conversation with me or longer.  They want to know how I’ve been recently, what I’ve tried, what works/doesn’t work, what brought on this exacerbation, symptoms, what I think we should do, do I think I should be admitted, have I heard of BT, etc, etc, etc.

So on this trip I got a few nebs, solumedrol, and was sent home after a few hours.  Some of my severe asthmatic friends liken this to a tune-up or oil change for your car.  You know, a quick maintenance sort of thing that needs to be done, and there are probably many other things you’d rather be doing instead.  I really hope I can stay on track with things for a while and not have to go back.  Things are really starting to ramp up right now with school starting soon and I kind of need to be around for stuff.

The funny part for me would have to be when the nurse was going through discharging papers with me and pointed out I was diagnosed with an asthma exacerbation followed by, “you probably know more about it than the paperwork…you probably know more about it than I do.”  Sounds like the nurse read through my chart.

Prednisone cataracts

Last summer after I was in the hospital for a few days, I noticed my eye sight was a little weird.  I had several ideas…the not sleeping and insane allergies gunking up my contact lenses seemed to be the best reason.  I also knew the crazy amounts of prednisone I was taking could possible be jacking up my blood sugar.  It turns out I was getting cataracts.

About a month ago I had my yearly checkup with the eye doc and found out for sure.  I didn’t even really think about the prednisone being a possibility, but the eye doc was certain.  There are six common causes for cataracts and one of them includes the long-term use of corticosteroids.

At face-value this would seem like a major bummer, but it definitely could be worse.  The good news is cataract surgery is quite effectively and not a huge deal like it used to be.  For now I just need to get stronger contact lenses and check in with the doc to make sure they don’t get worse.  At the moment they aren’t severe enough to warrant any immediate action.

One thing I did appreciate was my eye doc stressing to continue taking my medicine.  Obviously breathing is important and it’s not worth risking my pulmonary health over my eyesight.  There really wasn’t a chance of me stopping my medication, but I know a few who would freak out and do just that.

February

A lot of things have been happening this past month

  • I had several asthma attacks due to over exerting myself in the snow outside in sub-zero temperatures
  • My prednisone in-take is finally back down to 5mg again
  • I’m finally starting to lose some water weight from the lower prednisone dose
  • I’m not feeling great, but also not feeling awful every day
  • We have a new kid in the house
  • Philip Seymour Hoffman died
  • I heard I might get off the prednisone in 6 to 12 months
  • Jimmy Fallon finally kicked Leno out
  • OLYMPICS

Prednisone:

While I’ve always had at least moderate asthma, there were always a few things that separated me from those with serious asthma problems.  Prednisone was something I had to take every so often, but never longer than a week, two at the most.  Last year I did a taper or two and then have basically been on it since late May.  While it drives me nuts and has some unpleasant side effects, I strongly believe it’s keeping helping me breathe better and I’d rather take these pills every day than end up in the ER on a regular basis like I was doing just a few months ago.  I know some people who have been on prednisone for years and can’t really relate to that.  There’s a good chance I’ll be on these steroids for a while, but at lest there’s a chance I can stop taking them before 2015.

Exercise and activity levels:

You never quite understand exactly what you have until you don’t have it anymore.  I’ve heard this statement so many times, but it’s never rang truer this past year.

  • I used to park half a mile away from my building at work and do the one mile round trip 1-3x a day.
  • I never had to consider just how far away something was on campus before deciding to walk, catch the shuttle, drive or not go.
  • I have to carry a man-purse with all my medical necessities everywhere I go.
  • At some point in time, every day, I feel kind of awful.
  • I try to make plans but often have to cancel them.

I’m trying to walk around as much as possible and not worry too much about doing anything heavy duty.  I think Liz enjoys yelling at me whenever I try to do anything outside.  Last week my local lung doc told me to stop breathing the cold air, so I guess I should probably listen.  Fortunately Spring is on its way so as long as allergies don’t kill me, I’ll be able to start walking outside more as well.

New Baby

Yes, we have a new baby in the house.  I recently listed off a list of possible nicknames for the little dude, but Liz is calling him Neville on the internets so it seems I should too.  Chuck has been great.  She’s very helpful in an appropriate way without bugging or pestering the little guy.  He’s pretty chill and Dude-like, which we appreciate.  He’s also not up every hour all night long so we have been getting some sleep.  While there is a certain amount of stress with taking care of a new baby, the worst is getting busy and forgetting to take my medicine, which doesn’t help at the end of the day when I sometimes crash out of nowhere.

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It’s hard to stay mad at him too long for forgetting to take my meds.  The kid already loves beards.  THE KID LOVES BEARDS.  He also likes taking it easy and folding his arms like he’s in a 90s boy band.

Brandt Died

It was a real shock for me to learn Philip Seymour Hoffman died.  The New York Times posted the story and I learned about it a mere three minutes later.  He was truly one of the few great actors of his generation.  We’ve tried to come up with other actors who are at the same level he was…it was hard to come up with a list of names.  I haven’t been affected this strongly from a celebrity dying since Heath Ledger died, only Hoffman passing is a much bigger deal.  It’s weird to think Jackie Treehorn and Brandt are no longer with us.  I can’t even imagine what kind of roles and performances could have come out of Hoffman in the next 20+ years.

Prednisone refill

This week I had to call up my lung doc to get the prednisone refilled.  When I picked it up the next day at the pharmacy I noticed it has 11 refills between now and Jan 2015.  This either means I’m on the stuff for a lot longer than I want or he’s just tired of the refills.  I’m pretty sure I’m just going to be on it for a while and even though I heartily dislike popping these particular pills every day, it’s a better alternative than trips to the hospital every few weeks.

Last year I was told I basically had three options:

  • Become steroid dependent
  • Look into bronchial thermoplasty
  • Go visit an asthma center and get a full pulmonary diagnosis

Since then I’ve started SARP and have been on prednisone for months.  The good news is I’m at work most of the time and can walk around without feeling horrifically awful.  I still have the occasional setback, but I haven’t been to an ER/ED for almost three months.  I don’t spend all my time in bed or lying down like I used to.  I’ve been able to socialize a bit, cook food I want to eat and do random things here and there.  While I don’t see myself being magically better any time soon, I am seeing very slow and gradual progress towards being not so chronically ill.  I’m really hoping to make some strides this winter and stay away from flu/pneumonia in order to not be knocked off my feet when allergy season starts up again.

Prednisone: Love it? Hate it?

The drug I love to hate…

prednisoneBottles

…that would be a picture of most of the prednisone bottles from May 2013 through December 2013, and it doesn’t include all the IV steroids and kenalog shots I also received.  I’ve been on many, many prednisone tapers in the past 20-odd years, but I’ve never been on corticosteroids for this length of time.  While it’s one of the standard drugs doctors love to prescribe for asthmatics, and it generally works quite well, the side effects can be quite awful.  In the past I’ve mostly dealt with insomnia and loss of appetite but this summer/fall I also experienced:

  • increased hunger
  • extreme cold-sensitivity in my teeth
  • shakes/tremmors
  • high blood pressure
  • rashes
  • joint pain
  • muscle cramps
  • muscle weakness
  • water retention
  • weight gain
  • puffy face
  • large purple stretch marks around my abdomen
  • swollen hands and feet
  • mood changes/irritability

These aren’t all the side-effects but they were the most prominent ones.  Some of them point to Cushing’s Syndrome, but I never really discussed that with my doctors.  The worst has probably been the 30lbs I gained and have had a hell of a time losing.  People perceived as “fat” get shamed for all kinds of inappropriate reasons, but has anyone ever considered health conditions?  Asthma is one of those things that can easily lead to weight gain from medication and the inability to exercise.  Unless you stay on top of exercising to any degree, it’s very easy to become deconditioned quite quickly.  In the past my asthma has had the least effect on me when I’ve been most physically fit.  One of my goals for this year include minimal exercise as I continue recovering from last year.

A couple of weeks ago i finally received the “OK” to drop from 5mg to 2.5mg.  In the past week I’ve had a slight flare up and jumped up to 20mg with a quick taper to get things under control.  My main lung doc wants me on the 2.5mg for the next two months until I see him again.  While I hate being on the stuff I can’t disagree with his caution.  I don’t need to repeat any of the seven ER trips I made and I can’t really afford to miss a large chunk of work again any time soon.

Spirometry

If there’s one thing that can turn my day into a horrible, sweaty mess it’d be a breathing test.  After I showed up at my lung doc’s office earlier this week to find their computer system in shambles and my appointment lost, they rescheduled me for today.  I showed up 10 minutes before my appointment to find the computer problem even worse than before.  Cardiology was turning all patients away and forcing them to reschedule, but fortunately pulmonology was seeing any patients who arrived.  My appointments were still in the computer from a couple days ago as I was scheduled for spirometry and then a visit with the NP.

So a couple weeks ago I became extremely congested, which slowly moved from my sinuses to my throat to my chest.  I did a measly five-day z-pack, which I was skeptical about, yet they tell me I only have expiratory wheezes now.  I’ll take that over the constant accordion noises I was making at the beginning of the week.  My visit did start out with spirometry which really isn’t a big deal.  On a good day I just exhale as forcefully as possible into a tube and as long as I have three good attempts that aren’t statistically-significantly-different (did I just make that hyphen up?) from each other, I’m good to go.  Not so much today.  Any resemblance of a forceful exhale was sending me into coughing fits and I sounded like those old people who see my doctor.  You know, the ones with SERIOUS breathing issues who are targeted by all the commercials for my medications.  Even the nurse said, “GOOD GRIEF!  Sounds like we’re breaking some junk up in there!”  Eventually I had three that were similar enough to count and I actually felt much better after breaking up all that junk.  Unfortunately that feeling last maybe an hour before I was back to where I was.  This is why trying to stay active is important and why they’re always worried about people lying in hospital beds getting fluid in their lungs.  There’s still no end in sight yet for my prednisone habit, but I’m hoping my exhales can start sounding less like the 70 yr old thankful Spiriva allows him to eat dinner at the table and more like…well, a normal person.

Fall 2013: ER Vist #7

I should note this isn’t my 7th visit for this part of the year, but my seventh 2013 visit.  Things were going ok, until I ran into some snags with environmental triggers and needed to up my prednisone dose temporarily.  That was working pretty well until I dropped from 40mg to 20mg.  I was having increased night time symptoms and my oxygen levels haven’t been in the normal range like they usually are.  Last week I passed out a couple times at home.  I’m just glad it didn’t happen while out and about anywhere.  My weekend was a little rough as usual with most of my time just spent in bed or on the couch.  One of those things I’m almost always asked at work on Monday is how my weekend went, what did I do, what did I accomplish?  I usually give some non-committal answer because who wants to know that I only slept about 10hrs total, laid on the couch for 24hrs and watched 32hrs of television?

Monday was a little rough for me at work.  Liz was thinking maybe I should stay home but I needed to teach that afternoon.  I made it through the class ok but was constantly having to stop and breathe as I wasn’t able to get enough air out while talking.  It’s one of those things that can be hard to explain without having experienced it before.  I guess you could imagine trying to have a conversation while jogging/running too quickly.

Monday night was worse and Tuesday morning even more so.  Once again Liz was questioning my need to go to work and asking if I needed to go to the hospital.  That’s always a sign the inevitable is becoming obvious.  That morning I woke up with peakflows around 50% and my oxygen saturation under 90%.  Getting my morning meds and some albuterol in me usually perks me up, but by the time I was at my desk an hour later I was right back where I had started with my O2 bouncing between 87-92%.  I got another neb going and informed Liz what was happening.  I didn’t improve much at all so within an hour Liz had picked me up and gotten me over to my “Cheers,” aka the local hospital, where everyone knows my name on the night shift.  Even though this was early/mid morning, my nurse was someone I’ve seen several times before and the ER doctor on duty was one who had treated me earlier this summer as well.

I really enjoy working with medical professionals who take the time to listen and read.  This doctor knew I had been in there before and instead of doing the standard gamut of tests and imaging scans wanted to know what I thought would help.  We briefly discussed a few things and minutes later they started an IV with 125mg of salumedrol along with some ativan to try and relax things inside my chest.  On room air I was able to get back up to 95-96% for a while and then it started dipping back down to 90-93%, but it was better than when I arrived.  They eventually let me bounce around lunch time and I was able to spend the rest of the day resting at home.

The original taper for the day, plus the IV drugs and the modified prednisone I took later in the day got me up to about 200mg which isn’t exactly for lightweights.  I really hate the side effects of the drug, but it at least offers significant benefits for me.  Today I’m able to somewhat talk and walk around the house a bit.  I’m not constantly panting or looking for something to grab onto or hold.  Yesterday at work I went to fill a water bottle at the sink and had to find a chair to sit down while the bottle filled.  I don’t feel fine by any means, but I’m at least able to be up and moving around a bit.  Hopefully I can go back to work tomorrow and get a day in before I head back out to PA to follow up with my non-local pulmonologist.

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.