IBD
Prednisone
December 9, 2021
in IBD
I think most of us have been put on Prednisone at some point, and I think it'd be fair to say that most of us also have a love-hate relationship with it. We love how well it works to calm a flare, but we all hate the side effects (moon face, anyone?). So, with that in mind, what were some things that you found worked well for you when you were on Prednisone, either to minimize side effects or to even just handle the mental toll that Prednisone can take?
Some things that worked well for me:
- Trying to keep as many healthy snacks in my house. I was so hungry literally all of the time, and I found that if I could at least convince myself to eat a banana instead of a bag of chips, the weight gain (both actual pounds and water weight) was more manageable.
- Taking Prednisone in applesauce. I hate how Prednisone tastes. It's so disgusting and the aftertaste just lingers. 🤢 But if I put it in applesauce, I was a lot less likely to end up tasting it.
- Telling friends and family what was going on with me. The roid rage was real, and that meant that sometimes I overreacted to things that I would normally take in stride. By telling my family and friends that I didn't mean to be so snippy, they were able to handle how they reacted to me. In turn, that meant fewer fights over inconsequential things.
- Wearing a flowy wardrobe that could hide some of my weight gain. I was so uncomfortable with my weight gain and it happened so fast that the last thing my self-esteem needed was people commenting on how I was rapidly gaining weight out of seemingly nowhere. I found that wearing clothes that weren't so tight fitting made me more comfortable, but also helped me feel more attractive and kept my self-esteem up. It's superficial, but it helped.
- Letting my feelings out to someone I trusted. Taking Prednisone usually meant that I also had some other stuff going on. There were A LOT of emotions to process, and I found that I had an easier time managing all of that when I could vent to someone who could just lend a listening ear and maybe a nice, long hug. Bottling those emotions up never served me well.
What worked well for you?
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Care Partner of Adult
This is all great advice. However, I feel the need to add a cautionary note of advice:
Make sure your dentist knows you are taking prednisone (and not just a short course) and make sure that dentist understands the repercussions. One of the horrible side effects is tooth sensitivity since prednisone weakens tooth enamel. If a dentist/hygienist doesn't understand that, they will cause great pain if they use the water pressure tooth cleaning technique.
I had no idea that this was a common complication of long-term prednisone use (my son was on for 18 months before being declared refractory and having his colon removed), and our idiot dentist didn't know either. We all admonished my 13yo son for crying and squirming in the chair when he tried to clean his teeth. To this day, it haunts me to realize we made him suffer a full cleaning, having every one of his nerves shocked. :-(
Patient
These are such good tips.
I would add to really practice kindness with yourself during this time. So much of what is happening in your body is out of your control when you're on Pred.
The other thing I wish I could tell my past self is to stop avoiding pictures. I refused to have my picture taken when I was on 60MG a day for months because I just didn't look like myself and I was ashamed. But in that process I removed myself from important memories like the birth of my niece. There are no photos of me with her until she was about a year old and that makes me really sad now. Approach your moon face knowing that it will be temporary.
Yes to practicing kindness with yourself! It's so hard to be sick and moody and angry and sweating and zitty and gaining weight.
One thing for me re: prednisone is that I often refused it until I could get scoped. I had a hard time feeling like the severity of my disease was being taken seriously. I mean, I was on biologics, so it's not as if I was being told there wasn't an issue, but I think for someone who's overweight, the toll of IBD isn't totally acknowledged. I wanted to know what was going on and have my GI see it, too before doing something that would mask the inflammation.
I've done short courses of pred without worrying about this, but if I thought it was going to be a longer course, I really wanted to know what the situation was instead of starting prednisone and then getting scoped 6 weeks later and having the doc say things don't look too bad.
Totally agree with this! I think it's important to keep that in mind: you're not at fault for what Prednisone does to you. It's so important to be gentle with yourself.
I also agree with the pictures part. I had a bad flare during my final semester of my senior year of college and was on high dose prednisone for an extended period of time. My face swelled like a balloon (and so did the rest of me). As a result, I didn't really want pictures taken on my graduation day because I felt unrecognizable. I regret that so much because that was such a huge moment for me and a major accomplishment, but now I hardly have any pictures to commemorate that.
In short: take the pictures and love yourself because you're an amazing warrior and you deserve that love!