As I said in a previous post: “Oh, prednisone, what a magical, terrible drug you are”. And I mean it. For people with IBD who are in the midst of a bad flare – prednisone can literally be a lifesaver, as it can knock down inflammation FAST.
Of course, I am not a doctor, and everything I say in this post should be taken with a grain of salt. However…for better or worse, I do have a lot of experience with prednisone. From 2017 – 2021, I was on and off varying doses of those so-called “Devil’s Tic-tacs”.
One thing I want to highlight: this article is NOT to scare people off prednisone. Quite the opposite, actually. Prednisone is an essential medicine in the treatment of IBD. But, like all drugs, it needs to be respected.
Myself, I am thankful for the relief of symptoms prednisone brought me at the time. But, I am also grateful every single day now that I no longer have to take it.
I heard prednisone is a steroid?
Yes, prednisone is a type of medication known as a corticosteroid. Prednisone works by decreasing inflammation and lowering the body’s immune response, helping to alleviate symptoms such as pain, swelling, and auto-immune reactions.
For many, a short course of prednisone is enough to calm the major symptoms of an IBD flare-up, such as excessive GI bleeding, diarrhea, urgency, and cramping.
How is it taken?
With prednisone, the goal is to induce remission (i.e. GI healing and absence of symptoms) and then switch over to a different drug (i.e. biologic or other) to maintain remission.
Think of prednisone like a hammer. When there is a sudden need to address acute inflammation and symptoms, prednisone can quickly provide relief, much like a hammer can swiftly help with various tasks. Like a hammer, prednisone is both strong and non-specific.
On the other hand, biologic drugs can be likened to a screwdriver. Biologics are more “precision tools” that target specific pathways or molecules in your GI system. While they may take longer to show results, biologics can provide a more focused and gentle approach to managing IBD. They can also be used indefinitely with less risk of harm or damage.
As IBD is, unfortunately, incurable, the overwhelming majority of people will be on some sort of maintenance drug (like a biologic) for the rest of their lives.
Prednisone is usually taken as an oral pill. In severe cases, such as when you are hospitalized, you may be given prednisone by IV, which allows for more rapid absorption and quicker onset. Common starting doses are in the 40-60mg range for oral prednisone. After a specified time, you will likely taper your dose by ~5mg per week, depending on how well your symptoms are controlled.
The good, the bad, and the ugly…
In many ways, prednisone is a wonder drug. For most people, it brings them out of a flare quickly. But it also has a rather menacing reputation.
Initially, I was very hesitant to go on prednisone (terrified was more like it). I had heard all the horror stories. In the end, my body chose for me – I was so sick that I was essentially forced to go on prednisone.
Prednisone can be viewed as a double-edged sword. It is beneficial, but it can also cause a number of scary, uncomfortable (and sometimes truly bizarre) side effects.
Like many drugs, individual’s experiences with prednisone run the gambit from “ehh…that wasn’t too bad”, to “oh my god that drug turned me into a raging psychopath”. My personal experience was somewhere in between those two.
Due to the potential Pandora’s Box of severe (and dangerous) complications, you cannot be on the prednisone forever. Your GI will ensure you are on it for the least amount of time necessary. The shorter, the better.
Short-term side effects
Side effects will vary according to the dose of prednisone you are on and how long you have been taking it. The most common are:
- Increased appetite, food cravings, and weight gain
- Mood changes, irritability, restlessness, anxiety, shaking/racing heart
- Sleep disturbances
- Skin problems and acne
- Puffiness (especially in the face and extremities), bloating and fluid retention
- Increased susceptibility to infections
- Indigestion and stomach discomfort
I experienced most of those symptoms to varying degrees. Definitely the increased appetite and weight gain. Sleep was extremely difficult. I felt shaky and “keyed up” all the time. I had terrible problems with acne on my back and chest…so bad I was scared to wear white shirts. Mentally, I was pretty fragile. I know I wasn’t the most fun person to be around during that time. It sucked.
But you know what else sucks? Being in an IBD flare! So, in a way, it’s often the price you have to pay if you want to get back to remission-land.
Longer-term side effects
Prednisone must be used judiciously because of the risk of severe side effects, especially if it is used over the long term.
Unfortunately for me, I was on prednisone quite a lot longer than the average person dealing with IBD. For whatever reason, whenever I tapered below a certain dosage, I would flare again.
This happened repeatedly as I trialed three different biologics (Humira, Entyvio, Stelara)…ultimately without success.
Finally, after ileostomy surgery and an extremely slow taper that took over a year…I was off it. However, my adrenals never rebounded, and now I must take hydrocortisone to supplement my cortisol (another long story).
Potential long-term side effects of prednisone include:
- Low bone density and osteoporosis
- Teeth and dental problems
- Adrenal issues
I have also experienced all of the above – lucky me. You may be more fortunate.
Word of caution: long-term of courses of prednisone may suppress the body’s natural cortisol production, potentially leading to adrenal insufficiency upon tapering or discontinuation. After my ileostomy surgery, I initially tapered off prednisone too fast, and that is precisely what happened.
In rare cases, adrenal insufficiency can lead to adrenal crisis, a potentially life-threatening low cortisol event. Essentially, your body starts going haywire because it is operating with zero cortisol. This can cause pain, extreme lethargy, reduced consciousness/speech problems, and delirium. A trip to the hospital for emergency dosing of corticosteroids is required.
This also happened to me once…and it was one of the scariest moments of my life. If you are tapering prednisone, and are experiencing any of the above symptoms, get the hospital ASAP!
Final word
So that is prednisone in a nutshell. Yes, it can be daunting to have to take it. Yes, some of the side effects can be unpleasant, scary, and downright embarrassing. But also, yes…it is usually effective for bringing you out of a flare. Depending on the severity of your flare, it may be your only option.
For the majority of people, the side effects of prednisone are absolutely survivable…tolerable even – as long as you have realistic expectations, are compassionate with yourself, and have the right supports in place.
That will be the topic of Part 2 – “Tips for coping while on Prednisone.” Sorry to leave you all hanging…so stay tuned!