Prednisone…

The drug we hate to love.

I think I mentioned previously that at the last appointment with my rheumatologist, prednisone was added to my list of meds.  Given the side effects people experience, I was a bit leery.

  • Sitting around in pain has wreaked havoc with the size of my waist, and I wasn’t particularly looking forward to taking a medicine known to stimulate the appetite and cause weight gain.
  • Prednisone also has a reputation for providing lots of energy – even when it’s 2 a.m. and you want to sleep.
  • Another not-so-wonderful side effect of prednisone is irritability.

Well, I’m happy to report that the prednisone hasn’t affected my appetite one bit.  I’m also happy to report that it’s provided enough pain relief that I’ve been able to sleep soundly most of the time without being awake half the night.  Two out of three isn’t so bad, right?

Unfortunately, when I first started on 20mg of prednisone, everyone I encountered started acting like idiots, saying the stupidest things and driving me up the wall.  Everyone!   Most of the time I bit my tongue, but there are a couple people still not too happy with truths I voiced.  After three days I reduced the prednisone to 15mg and only half the people I encountered were jerks.  After another three days I dropped the pred to 10mg and the world returned to normal again.  “Oh, wait,” I thought.  “Maybe this is this that irritability that’s listed with the side effects.”  Then I thought back over some of the things that had happened and decided, no, it wasn’t the pred; those people were way out of line.

sigh

Another thing that happened at my last rheum appointment was that my doctor started the appointment telling me that I should have phoned instead of just dealing with the fact that the new biologic wasn’t working for me.  Then she finished the appointment by admonishing me to keep in touch between appointments.  How very different from my previous rheum, where I was told that there would never be any reason to call between appointments (and when I did anyhow, he wouldn’t take my call).  I thought about it for a week, and concluded that it might not be a good idea to go into my next appointment without checking in by phone to report how things were going.

The result of that phone call is that my prednisone dose has now been increased back to 15mg - and wouldn’t you know it, the very day that I added that extra pill, people started acting like jerks again.  It seems my threshold for the irritability side effect is somewhere between 10-15mg.  After getting exasperated at my kids for the seventeenth time before 8 a.m., I sat them all down, apologized, and explained that one of the possible side effects of one of my medicines is irritability.  I realized that it was me, not them, and that I’d try to be extra patient, but I could sure use a little help, too.  They’ve been terrific.

All things considered, the prednisone helps enough that I’m willing to continue taking it for a while.  I just remind myself to take a deep breath and not snap at people.

A look back at my posts over the past month shows a disproportionate number of rants.  My apologies.  I’ll probably keep the posting light until the world seems a little less annoying.  In the meantime, I’ve been updating my blogroll, removing links to blogs that have gone inactive.  A few blogs that I intended to keep disappeared – no idea why – so if you notice that you’re not in my sidebar, it’s nothing personal.  Just drop me a note and I’d be happy to list your blog.

Thank you for checking in.  Wishing you a happy, pain-free week.

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21 thoughts on “Prednisone…

  1. I really enjoyed this post. It’s great to know you have a Rheum so willing to truly be involved. Your description of how you involved your children in the process of recognizing the effects of Prednisone is a great example for all parents…all people really. I don’t know if I’ll ever know why Prednisone allows me to use my arms and walk. 10-15mg is also my threshold for not feeling wired or weird. Also wishing you a pain-free (or at least reduced) week.

    • Thank you for commenting. It’s taken me a while to adjust to a rheumatologist who actually cares how I’m doing. Soooo nice! I’ve followed your journey; it makes sense that if you can function when you’re taking pred, and can’t function when you’re not, that someone would use that as a starting point to see if a different med would help more without the drawbacks that come with long-term prednisone use. I’m hoping that happens relatively soon for you.

  2. I took a prednisone taper once a very long time ago for severe poison oak. I remember feeling a bit “odd” during that week–AND that people really rubbed me the wrong way. That I can even remember that makes me very empathetic to you and your story, Socks. I’m glad the prednisone is working to relieve your pain, and I’m glad you’ve been able to discover why people are suddenly so incredibly annoying–and cut them, and yourself–a little slack.

    Here’s hoping you won’t need to take the stuff much longer. Sending you lots of warmth and comfort through the ether! ;)

    • Thank you, friend. If you remember what it was like long ago, that speaks volumes. I’m starting to suspect that I’ll never feel “normal” again, but at least I can get by with how I’m feeling now (as long as I cut people some slack). Things are looking up :)

  3. Really hope it gets RA things back under control for you (how’s your shoulder – is that the worst still?), Socks, and that you can keep some of the other side effects dampened somewhat. Everyone’s thresholds for each of the side effects can vary quite a bit, even within one person at any given time. I don’t think docs realize that. Hope you won’t have to stay on it too long. I’ve been on it a very long time, yes with weight gain, irritability and other ‘mental’ effects, etc. in addition to some Cushing’s side effects including the lovely purple stretch marks and buffalo hump. Have been doing a very, very slow taper and am down to 2 mg. Not sure how fast I’ll try to do the last of this as I think I still have some low level activity going on, but have lost a good bit of weight and the moon face! Adding plaquenil has helped a lot with the taper. Not sure where to go next as I don’t think I want to add biologics still. I don’t want to have to stop them due to infections and risk relapsing to worse and having a harder time getting it back under control! Maybe see about injecting mtx at higher dose, or adding low dose doxycycline. No I don’t buy into the minocycline theory. Thinking of doxy more along the lines of periodontal and OA and long shot direct RA. There has been some looking into doxy along those lines and seems appealing. Or see if we could try desensitization to sulfa and try adding ssz.

    • Good to hear from you. The shoulder has been the worst for quite some time, but at 15-20mg the prednisone is even helping my shoulder. I’m finally back to being able to do those stretches/exercises – which is good, since I’m scheduled to play my guitar at the nursing home next week (gulp). That’s nearly impossible when my shoulder is acting up. Congratulations on getting down to 2mg. That’s terrific! If you look at the studies, I don’t think rate of infection while on a biologic is higher – it’s just that there’s the potential for an infection to have worse consequences. It might depend on what you’re doing and who you’re around, how many germs you’re exposed to. I drug my feet, afraid of the biologics. Once I started, though, I wished I’d done it sooner. I went 10-11 months on Enbrel without ever getting sick; it was just when a neighbor kid coughed right in my face that I finally succumbed. I think I’ve been sick less often, because I’m more careful about germ control. Good luck tapering off the last of the pred!

  4. My dog’s been on prednisone most of her life – 20mg every third day for a 70lb dog (and it’s pretty clear that it’s that or her eyesight).

    It’s clearly hard on her – no amount of training seems to make her trustworthy around food, and she still throws occasional tantrums when routines change. I watch her energy levels fluctuate from day to day, and wonder how different she would be if she was healthy.

    • That must be difficult, but it makes sense to protect her eyesight. At least you know what’s going on with her and can make allowances. Thanks for commenting.

  5. I have been doing the pred up and down from 2.5 to 15 as needed, since the Humira doesn’t do it all for me. I’ve found a little xanax as needed has been a lifesaver for nervousness/irritability. Just 0.5 mg dose. I don’t know why but I keep having fever and fatigue everyday even with the pred. It’s so annoying. I read your tnf post with interest, it saying that tnf makes fever. If this part would go away I could be so much more active. It seems there is no answer to it. I’ve had it every day since Jun 2010 when Enbrel pooped out on me. Thanks for all your interesting and informative posts!

    • Ronda, that sounds exhausting. One thing my rheumatologist said last time is that it’s rare but possible to develop antibodies to the TNF inhibitors. If that happens, it’s possible to switch to one of the biologics that don’t work on TNF. Maybe a different one would help? Thanks for commenting.

  6. Just finished a one month burst of pred for a total body id reaction.

    Gained 5 pounds, mild euphoria, increased distance runs, DJD pain faded, slept like a log.

    Except my skin about sloughed off before it came under control.

    Filled the prednisone square, I hope.

    • Good luck getting the weight off as quickly and easily as it went on! The benefits of prednisone are great; the side-effects not so much. Thank you for commenting (here & over at KevinMD); I enjoy following your blog.

  7. You are very perceptive of med.s effects. :) Glad you slept, felt some relief, but sorry you felt irritable. That’s me. I’m right there with you on the side effects. And I was wide awake at 2 am. Praying things settle down for you. Thanks for keeping us updated on how you are doing.

    • Good to hear from you. Wide awake at 2am is no fun. I remember one night I went to bed at 11 and was up at 2. The next night I was so tired that I did manage to sleep. I also discovered that if I take my evening pred about 5:30 I sleep fine; if dinner’s late and I don’t take it until 7, things get ugly ;) Hang in there!

  8. I had the same effect the last time I was on pred. I googled it and found that it’s a pretty common side effect. Prednisone is, after all, a steroid, and you hear about athletes who get aggressive and abusive when they’re on steroids, so it seems to fit.

    Understanding the problem is the first giant step in solving it and it appears that you’ve made a lot of progress in that area.

    Unfortunately, nothing is going to remove the real jerks in life …

    Glad you’re doing better.

    • Hi Carla. Good to hear from you. Just being able to take a deep breath and say, “It’s just the medicine. They’re not trying to annoy me,” helps. I had to laugh at Unfortunately, nothing is going to remove the real jerks in life…. Too true.:D

  9. Gosh, I read your post wondering if I am on prednisone because lately everyone has seemed like jerks to me. Nope, I am not on prednisone. I guess I am just grumpy lately on my own.

    I really enjoyed reading this post. It made me laugh thinking about you at the different intervels of people being jerks. Good luck and I hope you feel better soon. This is definitely a drug we hate to love.

    • Thanks for the smile, Cathy. I’m having trouble picturing you grumpy, but I guess it happens to us all sometimes. With any luck neither of us will encounter any jerks the rest of the week!

  10. I hope this all gets better for you fast!

    I remember one time when I was on prednisone I was really really mad. It was about pizza toppings. I could think in my head that it was unreasonable to be annoyed about this but still was cranky about it. I don’t know if I am better at covering for it now, or if it is because I have been on it so often lately, but I don’t seem to have that anger side effect lately.

    • I can picture exactly the pizza topping situation! It’s encouraging to hear that things get better and the side effects either go away or are at least easier to handle. Thank you!

  11. I had to laugh, because I’m just finishing up a pred taper, and when I was at 20 mg, I was surrounded by jerks too! Had some big ol’ fights… not usually like me!

    Sometimes I think I should just find myself a nice cave and live there while I’m on pred!

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