Back on steroids...I think I need a more positive image!

Hi everyone,

I called my pulmonologist today at my wits end. I keep having these asthma attacks, using my neb, getting better, than getting worse again. However I was undiagnosed with asthma, since my anatomy is also a bit odd. But at my wits end, after two months of trouble, and bronchitis for a month, I called my lung specialist today.

One thing is I'd like a clearer idea of when to go in to the ER (I'm in the States). His office was giving me the run around though! They wouldn't even tell me when he would call me back. He did call this evening though, which was really helpful. And he was very nice. He seemed to get how confused I was with the back and forth fun of my crappy lungs.

So I'm back on the cheap torture of oral steroids. And I was just thinking, I think I need a more positive picture of them. It does beat not being able to breath. But often I can't sleep well, and they speed my heart up too, which is a problem because I have a pacemaker. So I also just e-mailed my cardiologist as well. So...how do you guys get yourself past the rough bits? How do you think of oral steroids? I know some of you have to take them a lot. Do you have better ways of thinking about them than me, or do they still get you down? I'm on them for 10 days.

Thanks,

Bee

7 Replies

oldestnewest
  • Hey, Ive been on oral steroids now at varying doses for 3 years. They tore my body to shreds at first, but after a while, I found that the side effects did settle down. On the nights I can't sleep, well I use that as an opportunity to write, draw or even just sit and be in the company of my lovely animals. Whenever I feel crappy about them, I just think and remind myself what life was like before I was on them, I was in and out of the A&E 2 or 3 times a week and I really never felt well.

    I think that Pred has been seen in such a bad light that it has this kind of stigma attached to it and we sometimes forget that it is actually helping us, even if it can be a double edged sword.

    Hope this helps

  • Hi! Thanks for writing. Yeah, I agree that it's been given a bad reputation. I always dred taking it, but often realize that once I take it I actually feel much better than I thought. As I can breath. Also, I always thought the fatigue was due to the meds, but I think it might be due to the asthma itself. As every Autum, I'm just so so tired. But the pred. has actually given me a bit of energy, which is helpful.

    Thanks for writing. It helps me to see how I can view things differently. I also realize I stress about not being able to sleep, and that's probably not that helpful!

    Bee

  • Well I work in a hospital, and found out the other day that the very floor I had an asthma attack on...well they had removed and replaced the windows about 30 min. before I was on that floor! And then today I was on a different floor and the same thing was going on. Luckily today I remembered my inhaler! I found out though because the doctors I work with were concerned about the patients, and then I realized I had been on that floor when I got that bad attack a few days ago.

  • I also hate taking them because of how they affect me emotionally but when I've had a course I usually feel so much better that it's worth it. I really struggle with the side effects, which it sounds like you also do, but I also tell myself that getting stressed about it, is a trigger for my asthma so I wouldn't be helping myself by taking them and sitting there being stressed and frustrated.

    I try to accept the sleepless nights and get up and do something enjoyable and productive

    I reduce my caffeine intake because the pred makes me more anxious

    It isn't easy though and I hope you're doing better now.

  • Hi

    Don't know if I can help.

    I go on pred (the oral steroids) occasionally - on average once to twice a year usually after a chest infection.

    I was really worried the first time I had to take them back in 2007 but my GP was so lovely and explained why I needed them and what they would do. I told her my concerns about them (weight gain mainly) and we discussed how to deal with this. Her advice was to nibble when I needed to but to be very selective on what I nibbled on - she said cucumber, carrot, celery and tomatoe. I can confirm it definitely fills you up. So whenever I have to take pred now I nip to the supermarket for my nibbles!

    I then just eat normally.

    As for the side effects of making you overactive I have started to cash in on this and do what my body says I can do. Last weekend I chopped down the two trees that needed to come down and I have another to take down this week. If I can't sleep I stay up and read. I have to say that after a week this time my body told me to sleep and I did! I am currently applying for jobs so I am able to work later.

    So the advice from me is really - its ok, eat sensibly and follow your body. I do find that if I am active it does help me with the sleep. However, I am now coming to the end of the pred course and my maintenance dose of symbicort is back down and the pred dose is being reduced - AND I feel wonderful. It does work.

    Good luck and keep smiling

    Judi x

  • Hi,

    Em, that's it exactly. I get so reved up when I'm on the pred. But you're right, I have to tell myself not to mind about it. And to just do my best not to stress. And you're right too...I don't drink caffeine when I'm on pred. either as it just makes it worse. So far I'm doing O.K. My house is currently (as of today) a mess. But it's because I did kind of crash this afternoon.

    Gosh, you cut down a tree! Wow. I wish I could do things like that, but any little thing right now will trigger my asthma. I actually need to clean out my old car, as it died a while back, and I need to sell it. But there's no way I can do that right now. I did make a trip to the library today. And luckily I've been sleeping O.K., which is a gift for me when I'm on pred. I'm worried about when I taper though, because usually I'm hungrier etc. when I do that.

    I will have to try the veggie munching though...that's a great idea! I do get the munchies terribly and can't really afford to gain any more weight. I also joined the gym where I did my PT, and can't do cardio at the moment much, but did go and do my other exercises. Nothing too heavy or cardio, just mostly stretching and some light strength training. That seemed to help too. Now if only I can figure out how to do my laundry.

    Bee

  • Hi everyone,

    Just a quick update from me. I'm actually doing surprisingly well...after 5 days of pred. I was able to exercise a bit yesterday, which never happens! So right now I'm just really hoping I'll be able to taper, which is always tough for me. This is the hard part. But it seems the surgery worked, in that I still have pretty bad asthma, but now it's much more tameable with medium doses of meds, instead of the insanely high one. Wow. I'll take whatever I can get on that :). It seems odd, but a short couse of pred. might not be the worst thing! You all have a good day.

    Bee

You may also like...