The Up-and-Down, Up-and-Down Dance of Prednisone

By Vern Laine

3 min read

At some point in your IBD journey you will need to embrace the world of pharmaceuticals from 5-ASAs to immunomodulators, biologics to steroids.

If you are lucky, you may need only one of these or a combination of these. If you are like me, I have tried them all, either separately or in combination over my 35 years with Crohn's. But steroids are a love-hate relationship. In my case, prednisone was my doctor's drug of choice and I spent nearly 24 years on it.

Prednisone was the first drug I took for Crohn's

It took 6 months to get a diagnosis, but as soon as my GP diagnosed me – and before I ever saw a gastroenterologist – I was started on a course of high-dose prednisone and sulfasalazine to help with the inflammation. This was followed by a combination of drugs over the years but always included prednisone. I did not stop taking prednisone until I started biologics.

I remember when my doctor first told me that I was to start steroids, the first thought I had was of anabolic steroids and the horror stories I had heard over the years. I remember my doctor laughing and said that prednisone was not going to get me "jacked" so I had nothing to worry about as far as that was concerned. But prednisone had many side effects I needed to know about, including headaches, agitation, aggression, irritability, and weight gain,just to mention a few.

My pain was worse than the side effects

I did not care at the time because I was losing so much weight fast, and if this drug could help with the intense pain as well as put on weight, I would take anything at that point.

The main reason for taking it was to decrease inflammation in my intestines, thus helping relieve the pain. The weight gain never happened for me. Little did I know at the time that prednisone would become my main medication for over 2 decades.

So the question was, would prednisone be my friend? Or would prednisone be my foe?

Titrating up, tapering down... And definitely dependent on prednisone

I was started on a high dose, 50 mg per day, for many months before being tapered down by 5 mg every 2 days for a week, and then another 5 mg each week until we found the "sweet spot" where the pain was manageable. I do not think we ever found that sweet spot until many, many years later and after multiple resections.

I was maintained on 5 to 10 mg every day for years and my gastroenterologist allowed me to titrate up or down as I needed based on my pain levels and Crohn's symptoms. I did not have to see her first. If I felt my Crohn's was worsening, I would up the milligrams, but if I was feeling "good" another day, I would lower it back down, tapering by 5 mg each week until I maintained on 5 mg each day.

Prednisone and I played this dance for 24 years until I started biologics. I have been off prednisone since 2012.

Some with Crohn's and UC have horrible side effects

I know many people have experienced side effects from prednisone, but for me, I was lucky and did not have many. Except maybe irritability, but was that from the drug or the fact I was suffering from my Crohn's? I guess I will never know.

I never experienced "moon face" (puffing and swelling of the face) which I know many people do. I did however have to have a bone density test every 2 years to check for bone loss and possible osteoporosis.

Bone density and prednisone

Crohn's already limited my vitamin D and calcium, and then long-term steroid use made it worse.

Luckily, I never broke any bones from lack of bone density, but I did need to attend hospital to get this test. In the early days of my journey, the test took hours, but then new technology brought this test down to mere minutes.

I hated being dependent... But I needed steroids

I hated having to take prednisone every day for so so long, high doses at time and titrating up and down, up and down. But I often wonder how my Crohn's journey would have been without it. I am guessing worse – much worse. So, for me, is prednisone friend or foe? Friend, definitely friend. And I am thankful for it. How about you?

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

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AmaltheaFrost Member
Oh <inline-mention username="Vern Laine" user-id="2235632"/> , I feel for you. Like you, I've not had the moon face with prednisone like my daughter and cousin do. (Both have Crohns as well) I have had the most horrific side effects from it. It took me months to get my GI to admit (or look into) that the Solumedrol they use in the hospital has an oral form called methylprednisolone, and then to prescribe it. Its been my life saver. I don't react to it at all. If I had to use it like you've had to, I would be fine with it. I would also want the freedom of being able to titrate and taper, as well. That said, I'm glad there are biologics. Just waiting to see if the Skirizi works! Second infusion on the 27th.
Vern Laine Moderator & Contributor
<inline-mention username="AmaltheaFrost" user-id="6963969"/> Sorry you had such bad side effects but glad to hear something else worked. It is wonderful that there are now so many different medication options to help us. How has it been on Skirizi after the one infusion? Fingers crossed it works for you! Let us know how you get on and how it goes. Vern - IBD Team Member
Traci Musick-Shaffer Moderator & Contributor
<inline-mention username="Vern Laine" user-id="2235632"/> I definitely have experienced the "moon face." How did it miss you? I'm surprised to read how much and how long you took prednisone, but you never had the "moon face" side effect? I didn't even know that was possible until I read your story! I hate prednisone and will only take it for short stints. My biggest gripe about it is that it keeps me awake at night. Oh, it always makes me SUPER short-tempered! Those are two of my biggest gripes. But does it work quickly at tamping down my inflammation? Yes, it does. So, I have to accept the bad with the good. Like you, I can't tell you how many times I've been prescribed prednisone. Too many times to count! The moon face side effect was just embarrassing to me. I understood (at the time) that I needed this medicine, but I felt like I was a walking advertisement for both inflammation and prednisone. Yeah, that period in my life left me quite depressed. But I did get through it. Such is life. We do what we gotta do. Right? Moving forward into the new year, I wish you great health and a prednisone-free year! Cheers!--Traci, UC-IBD Team Member
1. Vern Laine Moderator & Contributor
 <inline-mention username="Traci Musick-Shaffer" user-id="2292299"/> Yes, I never experienced moon face and like you, I was surprised I never had that side effect even with being on for so long. I don't know why. I do get the short temper though but yes we have to do what we have to do. Happy new year to you as well and all the best for a happy and healthy 2024!! Vern
CommunityMember2381a0 Member
Prednisone is my friend, begged my GI to put me I. It to get me through the holidays and it has worked like a charm. I feel great! But when this 3 week dose is over she’s going to push me hard to start biologics, says if Zi don’t going to end up needing resection surgery. I’m scared of both and wish I could stay on Prednisone because at least I know how I handle it.
1. Vern Laine Moderator & Contributor
 <inline-mention username="CommunityMember2381a0" user-id="8793337"/> I'm glad you had a good holiday with the prednisone helping. I have had multiple resection surgeries and am on biologics. I became dependent on prednisone as it helped me immensely but didn't take all my symptoms away. I have been on biologics since 2012 and I have always said that it was a Godsend for me. I have not been on prednisone since then. I was on Remicade infusions for 8 years but my body became immune to it and was switched to Humira injections which I have been on for almost 4 years now. Having said that, even though I was on prednisone for such a long time, I still had to have resections. Prednisone helps with inflammation but you still may need surgery. My last resection was in 2020 when I had ostomy surgery and I am still on biologics. It's a hard choice to switch to a biologic as you are used to prednisone. All I can say is that, for me, I wished I had switched to biologics when my GI suggested it years before I actually did. I was content with prednisone but I am happy I switched. Vern - IBD Team Member
Eshani Agrawal Moderator & Contributor
Hi <inline-mention username="CommunityMember2381a0" user-id="8793337"/>, thank you so much for sharing your story! I'm so glad to hear that you were able to get through the holidays feeling good. Biologics and surgery can both be scary, but we have lots of people here who have been through both and would be happy to answer questions and offer support as well. <3 I myself have not had surgery yet, but I have been on a couple biologics. Do you know which biologic you might be put on? -Eshani (IBD Team Member)
Richard Faust Community Admin
Hi <inline-mention username="CommunityMember2381a0" user-id="8793337"/>. On top of the excellent information already provided, I want to share with you this article from our patient leader Kelly J on her experience with being thankful for biologics, but also discussing the negatives she experienced: <a href='https://inflammatoryboweldisease.net/living/thankful-biologics' target='_blank'>https://inflammatoryboweldisease.net/living/thankful-biologics</a>. Concerning surgery, our patient leader Paul wrote this article on things to consider in deciding whether surgery is the right path: <a href='https://inflammatoryboweldisease.net/living/should-you-have-surgery' target='_blank'>https://inflammatoryboweldisease.net/living/should-you-have-surgery</a>. Hope this information is helpful. Best, Richard (Team Member)