Surviving and (thriving?) with prednisone
In the last post, I described the love-hate relationship most people have with prednisone. As I mentioned before, prednisone is one of the best medications available for calming IBD symptoms and bringing you out of a flare. Unfortunately, few things in life are free…
The problem, of course, is that prednisone itself can cause a smorgasbord of weird and nasty side-effects that may, at times, have you thinking, “Is being on this drug worse than being in an IBD flare?”
Some people will sail through an 8-week course of prednisone with little difficulty. But, more often than not, people will say (myself included) that being on prednisone sucks.
For many, it can feel like a rollercoaster you did not sign up for – you are exhausted, but jittery. You can be a rage-monster one minute, then sad the next. Add in all the distressing physical side effects, and life on prednisone can feel like a real shit sandwich.
But, alas, fellow IBD warriors, all is not lost! Remember – the prednisone is healing you. And, most of all…it is temporary.
Often, an 8-week (ish) course of prednisone is all that is needed to bring you back to some form of remission. Then, the biologic (or other) medication you are on will likely allow your body to say: “it’s OK prednisone…the biologic has got this now. Prednisone, you can take a hike!” (after the requisite taper, of course).
Tips from a seasoned pro:
If you are required to be on prednisone…there are things you can do to make your time on the medication suck less.
1. Take care of your mental health – professional support
This one is probably the most important. Prednisone can put you through the ringer emotionally. Even if you have zero history of mental illness or mood issues, I highly recommend having even a few sessions with a Mental Health Professional, such as a therapist or counselor. I know…they can be expensive, especially if you do not have health insurance. But trust me, this is always money well spent.
Nowadays, especially with the rise of telehealth, access to counselors is simple, and there are many to choose from. It’s also easier to find someone that you “click with” which can make all the difference. Many counselors will give free initial consults too – so be picky.
Mental Health Professionals are skilled at listening and teaching coping skills (like mindfulness and self-compassion). Usually, it is just nice to have a safe place to vent, and talk to someone who is empathetic and nonjudgmental about what you are going through.
2. Diet and nutrition
Prednisone will likely increase your appetite. Sometimes, you might be ravenously hungry. Or have weird cravings. Keep lots of healthy, protein-rich snacks around. Make sure to stay hydrated, too.
Don’t be too alarmed if you gain a couple pounds. This is very normal. Try not to beat yourself up too much if your eating habits slip occasionally. Few people’s eating habits on prednisone are perfect.
3. Supplements?
It is good to talk to your physician or healthcare provider about this one, but certain supplements can be beneficial while taking prednisone. A good multivitamin is almost always recommended.
As prednisone can also negatively affect bone density, some physicians may suggest a calcium and vitamin D supplement.
Some natural health practitioners may recommend additional supplements, such as ashwagandha, L-theanine, licorice root extract, omega 3s, etc. These may be helpful, especially if you are tapering prednisone or recently finished it. Personally, I had somewhat limited success on the supplement front, but some people swear by them.
4. Self-care and sleep
Depending on the dosage you are taking, sleep on prednisone can be veryyyy tricky. And this can be really frustrating. To improve sleep, many find benefit in guided meditations and listening to calming “sleep stories” before bed. Natural sleep aids (e.g., melatonin or others) can also be helpful. There may be times on prednisone when you feel like crashing – make sure to take breaks during the day. Nap when you can…and don’t feel guilty about it!
Prednisone can also make you feel racey and jittery; many people have found that mindfulness and breathing exercises can help with this. Mental Health Professionals are often really good at teaching these. Some people like using the Calm or Headspace apps.
Any physical exercise or fresh air you can get will help too. Even something as simple as a quick 15-minute walk. Remember: don’t overdo it…prednisone can mess with your energy and sometimes make you feel like you are invincible (leading to an inevitable crash).
5. Tapering and blood monitoring
It is important to taper prednisone as slowly as possible – longer is often better. Even going as low as 2.5mg for a week at the end, then switching to 2.5mg every other day for a week before stopping.
Please, please, please…make sure your health team is monitoring your blood values…especially things like AM cortisol, thyroid, and testosterone (if male), as being on prednisone for extended periods can suppress the body’s natural production of these hormones.
Also, watch for signs of low cortisol after completing tapering (e.g., extreme fatigue) and confusion/delirium/very low blood pressure…which may be a sign of adrenal crisis. This potentially life-threatening low cortisol event requires immediate medical attention.
Naturopaths are often skilled in examining issues with cortisol. Many people have had great success with them, but they are obviously not a replacement for your GI and health team.
6. Radical self-acceptance
Finally, try to be mindful that this too will pass. I know it sounds cliche, but the prednisone is only temporary. Yes, you might get moon face. Yes, your skin might freak out. Yes, you might be extra-snippy.
But know it’s totally ok to cry it out…you won’t be the first. Or the last.
It’s okay to vent your prednisone-induced anger or rage in healthy ways (as long as no one is being hurt). It’s ok to feel like you may be losing your mind a bit. This is just the prednisone doing its thing.
Give yourself grace. Ask for support from others. Also, if you can, ask others to give you space if you feel like you “can’t handle people right now.”
Some people find journaling can help as an outlet for when your thoughts are being supercharged by prednisone. Nobody ever needs to see what you wrote.
Final word
For many people living with IBD, the occasional “date” with prednisone is just a fact of life. I won’t lie…being on prednisone can be scary, uncomfortable, and downright miserable sometimes. But taking it is often necessary to get better.
If you do have to go on prednisone, the right knowledge, support, and a bit of good ol’ fashioned determination can go a long way.
Likely, after a short course of Pred, you will be back on the road to remission and a better quality of life in no time…and can kiss those little white pills goodbye.
Then you can say “thanks for the memories Pred, I hope we don’t have to see each other for a long, long time…preferably never again. Byeee.”