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Recently, my doctor decided to give me a prednisone stash to use as I see fit. I mentioned that I have exacerbations often enough to require prednisone every 1-2 months (at least during the winter/spring). And although it’s my constant reality, I know that on a computer screen this can seem extremely drastic. Excessive. And I realize, in an effort to make light of my situation and not worry anyone who might be reading, I often talk about taking prednisone in an offhand manner as if it’s no big deal. I feel that this is misleading and I apologize.
While I live an extremely full and wonderful life, the truth of the matter is that my asthma is a bit complicated. It’s not normal to have exacerbations so often, I’m fully aware of this. Most of the time I have trouble identifying any trigger at all for those severe attacks. My pulmonologist and I actually are working to dig a little deeper and I hope to have something to report very soon.
So, with my newfound responsibility of being the one to decide when I need prednisone, I do have limits and don’t use it for any old flare-up. I kind of hesitate to start justifying it but here goes nothing. First, I consider how long the symptoms have persisted. If I’ve been steadily getting worse for 24 hours, I usually take that as a sign. I consider how much relief I’m getting from my ventolin. If I’m barely getting any relief or if I find myself using my inhaler every 20 minutes, then I know it’s time. If I’m thinking about prednisone, it’s because going to the bathroom makes me out of breath, applying mascara requires pursed lip breathing and I have energy for little else than leaning on a table. When my thoughts change and I start to see the emergency room as the place I’d like to be, I take prednisone.
I don’t like taking prednisone, just like any other asthma/IBD/lupus/cancer patient out there. I am well versed in the long term side effects. But it helps me breathe. It quickly gets me back to Danielle, and I can start doing Danielle things again.
I know I’m normally Queen Positive, and this post is a stark contrast to my norm but God it felt good to be honest. Scary, but good.
Things have gone pear-shaped again, despite the 50 mg pred. I felt great after my run yesterday but started to get really out of breath while doing my grocery shopping, of all things. It got worse as the evening progressed and last night was pretty miserable to tell you the truth. This morning is somewhat better but I’m still short of breath. I added 10 mg to my prednisone dose today, hoping that will do the trick. Tomorrow I will call my doc because I admit this is a bit of a pickle I’m in.
I don’t want to think about whether it was wise to run yesterday, it just is what it is.
Prednisone it is, then. I know that’s the right decision, I realize that if I don’t then my day will be ending in the ER or curled up on the floor of my room. Not to sound all scary and morbid, but that is the current reality. As long as the pred does its job, then I will be good as new very soon 
If it doesn’t, I’ll take care of that too. And as soon as it’s a reasonable hour back home, I will call my mom to update her. See what a star I’m being?
Which leads me to my next thing, I CAN’T BELIEVE I DIDN’T TELL YOU THIS BEFORE! So you know how every family has its lingo, its “isms”? Yes, well my family has many many many of those. For example, cross-country skiing will forever be “cross-crunchy skiing”, no idea why. Well to my mom, prednisone = steroids = asteroids. Yes, that’s right, my mom has been known to refer to steroids as asteroids.
As in: “Honey, are you being all huffy with me because of the asteroids, or is there actually something bothering you?”
And to me that would sound perfectly normal. Oooooh geez.
It is really difficult to define and describe both the notions of asthma control and severity. I think it’s difficult for patients to articulate what their level of control is, and it’s also difficult for physicians to assess it in their office. In addition, people can be bothered to varying degrees by the symptoms they are experiencing. A new asthmatic will (appropriately) be distressed by mild bronchospasm whereas the most seasoned asthmatics can carry on with severe breathlessness.
There are several guidelines out there which aim to define asthma control in an objective way. Some measure by how many times a bronchodilator is used in a week, or how many ventolin puffers are used per year. Other measures include days of missed school/work, frequency of unscheduled doctor visits/ ER visits, etc. There are all good things to assess, but no one criterion will give the whole picture. Asthmatics are just too darned variable!
I think that most asthmatics have skewed perceptions of how they are doing. We see ourselves as less sick or more in control than we actually are. That’s human nature and that’s how it goes for most things, not just illness. As bad as the bad times are, they can be forgotten when considering the big picture. I’m trying to take an honest look at how my asthma has been recently, just for kicks.
When I saw my doctor last week, I said that things were good, that’s what I would say if I saw him today. When he was asking me his questions, I could tell that he was less than satisfied with my answers.
Despite feeling good overall, I still need my ventolin every day. On some days, I will need it frequently, and if I’m running, you can bet I’ll be using it a lot. Do I wake up at night with asthma symptoms? Yes, especially if I’ve exercised that day, but that doesn’t mean I’m having a “bad night” every night. And YES, my asthma did get out of control last week, to the point where my inhaled medications were not helping and I had to resort to prednisone. BUT the point is that I took the pred early-on-ish and I had my asthma back in control within 2 days (this is a good thing).
I’m not a short-sighted-silly, and I’m not stuck in denial. I know, when I think hard on it, that these are not signs of mild asthma, nor signs of asthma which is particularly well-controlled. I know that your average family doctor wouldn’t be too pleased when presented with the above. But the thing is, I feel like my asthma is good right now, I really do. I’m living a really normal life, doing everything I want to do, and I AM RUNNING. So I’m not fussed about it, I’m in control.
This brings me to my next point: the runnning. I feel great when I run, the adrenaline I get from it is beyond compare and my body is thanking me a thousand times over. But I still get tight, I still cough and I go through a lot of ventolin. As I said above, it also makes my nighttime symptoms a bit worse. The gist I get from people is that they assume that now that I can run, I must not have asthma symptoms any more. I have told a few people that I do in fact feel my asthma get worse in the hours after a run, and their response seems to be then why the heck do it???
Cause I can. Plain and simple. I told myself I could do it, tried it, and realized that I can do it. I seem to have asthma symptoms whether or not I’m physically active, so I might as well take the route that is actually good for my body.
So, all these convoluted ramblings to say that my personal perception of my asthma at this point in time is that it is actually quite good. Also, I love to run.
I picked up my race t-shirt and bib!! The race is tomorrow and I’m really excited.
Hélène is my grandmother, by the way. She died of breast cancer when my dad was 18, at age 51. When I picked up my race pack, I looked at the t-shirt and bibs and had an unexpected wave of weepiness (maybe prednisone induced, I’ll get to this in a sec). Leading up to this run, I was thinking of it as a run, as a way to assess how I’m coming along with my running and how my lungs are holding up to it. Then I realized that this is a community event too, actually a damned big national community event, and that we’re all running for one reason. So many people have been touched by breast cancer, and everybody’s running for someone.
And while I hesitate to call the loss of my grandmother *my* loss, since I never met her, it kills me to think that if she had gotten sick 20 years later, she may have been a survivor. Then, my dad would have had his mother through his young adulthood, my grandpa probably wouldn’t have gotten so f-ing messed up, and I would have had the chance at a relationship with a very special (so I’m told) woman. So now that I am holding my “hope” t-shirt in my hands, I’m finding it a little overwhelming. I know that tomorrow, with everybody in their goofy pink race attire, will be even more overwhelming, but I’m sure that it will be in a good way.
Kerri is doing the Run for the Cure too, in her own city. Go Kerri! Steve of BreathinStephen is doing a half marathon in San Jose tomorrow. You rock Steve! I can’t wait to hear about how your guys’ day goes.
OK, so now on to my health, which has taken a turn for the worse in the past 24 hours. I got worse and worse from about 2:30 on yesterday afternoon, peaking at about 10 PM. I had a very hard time sleeping but fortunately I was able to sleep in some this morning. I was having trouble functioning this morning and feeling really really tight, so I cracked open a bottle of prednisone. I’m obviously in a hurry to feel better so I didn’t hesitate too much with it; I could hardly walk to the bathroom when I woke up. I told myself if there was no improvement by mid-morning I would go to urgent care and get some nebs into me. But I’ve been feeling much less tight for the past hour or so. I ran this plan by my friend XE, which helped tremendously. Thanks girl!
I’m still planning to do the run, as long as I feel well enough to run in the morning. If not, I’ll walk it. If I feel really bad, I’ll skip it and probably go to the doctor seeing as it will be 24 after starting pred. BUT, I’m still planning on running!!! I’m just really trying to get those lungs open today so that tomorrow will be fantabulous. Wish me luck! I AM being smart so please don’t worry.
It’s true, and I finally figured it out. Because when you’re down, prednisone is there saying “Hi, I’m prednisone. I can help you breathe real quick. You’d like that, wouldn’t you? All you need to do is give me your sanity and your judgement for about a week. Oh, and we’ll throw your stomach into knots, and don’t forget the hot flashes to remind you where I come from. Yeesss”
And when you are breathless and weary, and you think how hard you have been working, that seems like an acceptable trade-off. Anything for a little respite. 24 hours later when your breathing has improved so wonderfully and dramatically, it still seems like you got the better end of the deal. 72 hours later, when your brain is reeling but your eyes are glazed over and you could cry at the drop of a hat, you just want to throw those stupid little pills out the car window and drive over them many many times.
There’s a reason Breathin’ Stephen calls it the evil candy.
Hello, it’s me again. Can’t do much but sit with my laptop today. At about noon when I was struggling just putting my load of laundry into the washing machine and I refused to eat lunch because I was so breathless, I decided it was time to bring in the big guns, since ventolin is lasting me approximately 20 minutes. My mom zipped down to the pharmacy to pick me up a course of prednisone (I usually have a few repeat prescriptions at my disposal). So, booo prednisone. But yay to the fact that I didn’t wait to get to a critical point.
My mom made a *hilarious* joke as she handed me the meds. She said “you and your accordion were made for each other, you both have squeaky bellows”. Ha. ha. HA, Mom. Actually I did laugh a bit, but just to humour her.
(Yes, yes I play the accordion. Commence making fun….)
I am giving it until tomorrow morning for the steroids to kick in. And if they don’t well… you know.
I should probably sign off before I tell you more quasi-embarassing things about myself. TTFN.
Now that springtime has rolled around again, I am starting to think more about what this time was like for me last year. The return of the itchiness in my throat and lungs as well as the tight and twitchy chest makes the memory quite fresh, actually. Last spring was a particularly bad time for me and the lungs and I really am desperate to avoid repeating the same events.
Springtime back home was actually one of my better breathing seasons, and I was usually a relatively happy camper during March and April. The temperature was just right for my lungs, and the pollen count was never very high because of the arid climate. Springtime in my university city caught me totally offguard last year. I was utterly unprepared and somehow never fathomed that I might run into problems.
Early in April I had a nasty attack following a day spent being active outdoors and I had to resort to prednisone to stabilize it. After coming off the prednisone, I rapidly deteriorated again. I wasn’t too fazed at first, but it was getting to be quite disruptive, and it was the end of the semester and I coming up on exams.
One morning I woke early and just didn’t feel right. I can’t explain it, but some attacks just feel different and you know that you are going to end up needing help, probably sooner rather than later. I told my aunt that morning that “I feel like I usually feel when something really bad’s going to happen”. She had to go to work, but stuck the phone in my hand, stuck her cellphone on her hip and told me to get help right when I needed it. I spent the entire morning sitting in one spot, desperately trying not to move, because not moving was the only thing that was keeping me from going into a total attack. My aunt came home at lunch to check on me and when she found me in that chair she carted me right off to the clinic. At the clinic I saw my least favourite doctor (the one who listens to my chest through layers and layers of clothing), who sent me off with a perscription for prednisone. I went back home and settled back on my chair, the trip had made me worse. My aunt asked me if I could try eating dinner with them, I remember we were having penne. I only ate one noodle, and I specifically remember the effort of bringing it to my mouth and chewing on it being what sent me over the edge. I actually dropped my fork, and my aunt and I looked at each other and it was agreed that we had to go pronto. We get to the ER, and my aunt explains what’s happening. I sit down in the triage chair and promptly clamp up and fall forward. I was brought to resuscitation, given epinephrine, IV steroids, O2 and all the rest. I don’t remember the real rush-y part. The next thing I do remember is being sooo shaky from so many nebs that my aunt needed to bring the water cup to my mouth because I couldn’t even hold it for myself. I was also too shaky to blow my own nose, hold my own neb etc etc etc. I stayed in that night and the next. I had an exam to write the day after I got home (I think. I remember it was Determinants of Health, the easiest exam ever so that was lucky).
I can’t say I really felt better after getting home from the hospital. I think I was more stable, but I still felt very breathless and I was soooo tired. Yet, I still managed to write every single one of my exams and do well, which still baffles me to this day.I actually did have a blog at the time, but it was more a blog about being a med-student wannabe, and I was determined not to go on and on about my asthma; I think I only mentioned it a couple of times. This blog is quite a change of pace then! I went to the clinic for nebs a couple of times and had a couple of questionable attacks but I stayed out of the hospital. Whether or not I would actually be well enough to get home by plane was a real question, but I did make it back on the day I had planned to. Boy, were my parents glad to see me that day. They had been soooo worried, and rightly so.
Upon getting back home, I started to breathe much easier, but then I got a chest infection. Which is totally weird because it was May and well, that just never happens to me. So that put me behind a little bit but after that I recovered quite well. I didn’t have near as many attacks at home and generally felt better, and was using way less medication. After a week’s recuperating period, I started my lab job, which I loved.
So, you see why I am not really looking forward to the next couple of weeks. I enjoy the weather and everything, but I can already feel that I may be heading down the same road. That is why I’ve got all this hope that all my appointments on Tuesday will amount to something and one of the doctors will have a brilliant idea and we can get something together that will help me avoid this whole situation. Yes?
Last week was an exceptionally good week, lung-wise. I attribute it to finally getting rid of that pesky cold, to lower stress levels, but most importantly that I had recently been on prednisone and was still riding on that wave of very low imflammation. A lot of things are different for me when I am breathing so well. I can bound out of bed in the morning without having to cajole my lungs out of hibernation. My studying is much more focused and goes uninterrupted. I can take the stairs, run across the street, skip around, and I don’t have asthma on the brain all. the. time. My puffer comes out less often. I talk a lot more, I can laugh uncontrollably and I think my mood is generally better and brighter.
When this happens, I sometimes feel a little strange, like something is missing or like I am forgetting something. Because while it allows me to be my true self, I’m not really used to it. Weeeird, eh?
Anyway, yesterday I started to feel that little twinge in my chest that means things may be declining ever so slightly. The timing is about right considering it’s been just over a week since I finished the prednisone. I am of course getting right on it so that I can make it go away before it escalates. Hopefully I can!
The day looks absolutely BEAUTIFUL. I can’t wait to get out there! Of course I need to study today but I can’t resist the sunshine for a little bit.
Oh, and happy PI day!!! You know, the mathematical constant 3.14159265358979323846… because its the 14th day of the 3rd month! Surely a day to eat some PIE! It’s also Albert Einstein’s birthday and my mom’s birthday. Happy Birthday Maman!!!
As you probably know, I am wrapping up another course of prednisone to tide me through this viral infection. As you also know, I along with most people dread taking said prednisone. However, I don’t think I dread it as much as I used to, thanks to the nifty tricks I have picked up while on the stuff. I will share them, but I’m not endorsing them per seeee. S’just what works for me
1) ROLAIDS. Seriously, I probably overdo it with these but my doctor suggested it to deal with the nausea. I always pick up a pack along with my pred prescription.
2) Prednisone comes in 50 mg pills or 5 mg pills. My doctor awesomely started prescribing 10 5 mg pills a day instead of the one 50 mg. This way I can split them up between breakfast and dinner. It’s worth asking your doc if you have trouble. (I take them all in one shot on the first day though)
3) I KNOW it says this right on the bottle, but eat it with a big meal. Like, really big. Some milk to wash it down doesn’t hurt either. And I always try not to go for too long on an empty stomach either because it makes me feel plain yucky. Bedtime snacks help too. Really…
And while i have learned to tame my stomach when on prednisone, I have yet to figure out what to do about the mood swings. I can feel positively manic sometimes and it drives me bonkers. So if YOU have any tricks for that, then do let me know!
I had a pretty good day today. I skipped going to the library because I’m coughing like crazy and I feel self-conscious especially when it’s so quiet. Instead I went home during my long break and collapsed in my bed (Note to self: time to cut down on the napping!!). I then made myself some delicious pasta for lunch and went back to school. I actually quite enjoyed my 2 afternoon classes (music theory and biochem).
I do have one teensy rant for today. Why show up to a biochem lecture if you are just going to play mah-jong on your laptop and not write a single thing down or even look up at the slides? Come on now.
