Thank Goodness for Prednisone . . . I Think

During stressful times in my life, it’s nearly a given that my rheumatoid arthritis will flare up. Already struggling to keep up with life’s demands, a flare makes it far more difficult to get through a day, much less a to-do list. Swollen, aching, and exhausted, I’ll put a call in to my rheumatologist’s office, where I’ll be told to employ the first line of attack against a flare: prednisone.

On day one of a dose pack, I am always grateful. It is pretty amazing how quickly prednisone decreases swelling. I first beheld the wonders of prednisone right after my diagnosis of rheumatoid arthritis. Having been swollen and in pain for months without an explanation, I was beginning to think this would be my new daily reality as I went from doctor to doctor. However, once I was referred to a rheumatologist, he was able to diagnose me after one visit, and the first treatment he chose was prednisone. After just 24 hours on the medication, I remember marveling at being able to once again make a fist with my fingers, as they had previously been too swollen to bend to a 90-degree angle, much less curl all the way into a ball. Ecstatic to recover full range of motion, I was excited about the medication in spite of the possible side effects. Even to this day, I still feel that initial enthusiasm when I begin a dose pack and first notice it kicking in. After being in a flare, any decrease in symptoms is welcome.

Of course, the first night of my dose pack I usually have difficulty sleeping, but I typically don’t even mind because I’ve already been struggling for several nights to sleep while experiencing relentless pain. Not being able to sleep from feeling amped up is preferable to being kept awake by pain, and with the memory of that discomfort so fresh, I don’t feel frustrated from prednisone’s impact on my sleep . . . at least for the first night or two. However, as the days on the medication progress, the sleep disturbance from prednisone becomes more problematic. I increase my dose of sleep medication to compensate for the sleeplessness of steroids, but then I feel groggy the next morning.

Fortunately, my next dose of prednisone will give me a pick-me-up, and counteract some of the grogginess. After the fatigue of a flare, the burst of energy I experience shortly after taking my pills in the morning makes me feel like Superman after he gets away from the kryptonite that’s been weakening him. Like a kid high on a sugar rush, I feel giddy and energetic. It’s a welcome change of pace, and allows me to be more productive and play catch-up from the days of flare-decreased activity. For the first two or three hours after taking my prednisone, I’m once again feeling grateful for it.

That is, until mid-morning. I’ve never been a breakfast person, so I usually bring some yogurt and a couple of pieces of fruit to work to snack on throughout the morning. On a normal day, it tides me over to lunch perfectly. However, when I’m on prednisone I will have eaten everything I brought by 10:00am and I’ll still feel hungry. Ever since having my first child five years ago I’ve struggled to get back to my target weight. Any progress that I make in the goal is counteracted when I’m on prednisone, adding “steroid weight” to “baby weight.” The hunger I feel while on prednisone is different than what I experience on a typical day. There’s a sense of urgency to the hunger that makes eating between meals seem like a necessity rather than an indulgence.

Luckily, I’ve never had to take prednisone for longer than a six-week period. I know many people who have been on it for months at a time, acquiring the “moon face” that makes them look so different than they did before the drug. I’ve only had to contend with the medication making me feel different, for better and for worse, and haven’t had to deal with it making me look different as well. So while I am no stranger to the dose pack, I don’t have as strong a reason to curse it as others do. That allows me to be more grateful than resentful toward the drug. Yet, each time I take it, I do feel that mix of emotions. I am always eager for the rapid decrease in inflammation it will cause, but as soon as my fingertips drop the pill into my mouth my tongue is immediately outraged at the absolutely horrible taste (has there ever been a worse-tasting, faster-dissolving pill than prednisone?), and I’m immediately reminded of the side effects that will accompany the benefits of the drug.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Anita
    3 years ago

    Ah, prednisone. I’ve been taking the stuff since 1984. The lowest dose I’ve had was 4 mg and the highest was 15. I’m currently on 13mg and am trying to get back under 10. I’ve been lucky not to get the “hungries”, though I do have some moon face going on. My face was always rather narrow, so the effect is not as bad as it could be.

    The only negative side effects I’ve had are some osteopenia, but osteoporosis drugs and calcium supplements help with that. I’ve always had trouble sleeping, even before getting RA, so I haven’t noticed any sleep issues related to steroids. I take melatonin every night, which helps tremendously without leaving me groggy like sleeping pills will do.

    Prednisone was the first non-aspirin drug I ever took for RA after having a flare in 1984 (I got RA i 1982 at age 16) that left me barely able to get out of bed. The difference after a dose of steroids was amazing. It truly is a wonder drug, despite the side potential effects.

  • Tamara Haag moderator author
    3 years ago

    Thanks so much ffor r sharing your experience with prednisone, Anita. It’s so interesting how both the disease and the treatments for it impact each of us in different ways. I hope you meet that goal of getting under 10mg soon.

  • Connie Rifenburg
    3 years ago

    Tamara, I’m always amazed when I read how you deal with RA at such a young age plus children and work… plus write such coherent posts! Bravo!

    I have a question for others reading this, does anyone take prednisone on a regular basis? I do, and have had to for so many years, I’ve forgotten. 10? The lowest dose I’ve been able to wean down to is 5mg per day for the past 5 yrs or so. During flares, I will go up to 60mg/day and then slowly wean down.

    I also take a biologic. I’ve been through all the ‘normal’ meds; MTX, sulfasalz..(even when I knew I was allergic to is as a child-we tried it to see if I remained allergic to sulfa…yup!), oh, and all the rest..you know. But the only thing that has controlled my RA is prednisone..in combo with something else.

    I can remember when a dose pack worked, and I could get down to 1-2mg/day, but every time I had to take more prednisone, I could never go back down to the level I was at when I had to increase it temporarily.

    I have that moon face. I didn’t recognize myself when it first appeared. I always had an angular face… and that hump at the back of my neck (widow’s hump) we used to call it when I saw those women w/it I used to think “why don’t you stand up straight?” not knowing it was out of their control.

    And weight gain? That is the issue of daily struggle. I eat and then think “why am I so hungry?” and eat again. It’s true, you never really get satisfied. I just try to have less calorie food handy because I know I’ll grab “something” to eat.

    I’m 64 by the way, and my RA was diagnosed in my 50s, but I think I may have had it a little earlier. By age 57 I had to go on disability dealing with a 2-yr flare that had me bedridden.

    With all this said. All the “Negative Nellie” comments.. I am grateful every day for prednisone. Without it, I would be in so much pain and bedridden. So, weight, hunger, humps, and a little over-energy/anger, is still preferable to the latter.

    We all learn to be grateful for things (like Dave said) we never thought we could! Carry On.

  • Tamara Haag moderator author
    3 years ago

    Thank you so much for sharing your experiences, Connie (and for the kudos – thank you!). I don’t know whether you’re a Facebook user, but there have been a number of people who have commented about long-term prednisone use in the comments of the posted article. If you do use Facebook, you may find it interesting to read those comments.

  • Mary Mann
    3 years ago

    Tamara, Interesting that you are writing about a prednisone pack this week. I am two-thirds the way through a Medrol Pack. It has been a God send. My RA was screaming at me. 8 on the pain scale. Everything swollen. I couldn’t sleep at night in spite of help. No energy, battery expired. Started the Medrol and in 24 hours I started feeling better. Oddly, I could sleep(those roaming cytokines tucked away.) Swelling down. Pain a manageable level. Energy. My mind the efficient processor it once was. Happy Days!

    Thank you for your writing. I read your articles as I receive them.

  • Tamara Haag moderator author
    3 years ago

    I’m so glad this article was well-timed, Mary, and that you have found some relief from your flare. I hope that we may all find long-term solutions that keep those flares from happening in the first place (I’m still waiting for the right “wonder drug,” but holding out hope that the centrally they’ll develop it).

  • Dave
    3 years ago

    I truly know where you are coming from, Tamara! My 1st experience with it was in 1997. I got blindsided by Chrohn’s disease, after emergency surgery they blasted me with mega-doses of that evil stuff! I hated it then and thought it would surely kill me! (Incidentally, the Chrohn’s went away after about a year and hasn’t returned, thank God!) I refused attempts by Drs. to treat me with the stuff until my diagnosis with RA. That was the 1st week in May. Like you I had been swelled up and hurting for a long time. The Prednisone kicked in and almost immediately some very welcome relief! I tried to come off it about a month ago and flared pretty bad so my Rheumatologist delayed my coming off it. I will be off it regardless in about 2 more weeks and we will see what happens. Hopefully this time will be the charm and the MTX and Sulfasalizine will do their thing and I can avoid going on a biologic. That being said I never thought that I would be thankful for Prednisone but one never should say “never.”!

  • Tamara Haag moderator author
    3 years ago

    I’m crossing my fingers for you, Dave, that the other meds will have kicked in and be enough for you once you go off the prednisone! Thanks for sharing your experience.

  • Poll