Steroids: A Blessing and a Curse

Steroids: A Blessing and a Curse

lisa burks

Steroids are one of the medications used to treat Crohn’s disease, you may remember from my last column.

In fact, they are one of THE go-to medications a doctor prescribes for someone having a bad Crohn’s flare.

Wait, aren’t steroids for athletes?

When I say steroids, I’m not talking about the kind athletes use to buff up. Those are anabolic steroidsand they will do absolutely nothing for people with medical conditions like Crohn’s. The type of steroid that can help with such diseases is corticosteroids.

Cortico-what?

Corticosteroids are strong anti-inflammatory medications. They have many uses, including treating inflammatory diseases, auto-immune diseases, joint and muscle conditions, allergies, and respiratory diseases.

Prednisone is one of the most prescribed steroids. Almost everyone with Crohn’s will take it at some point. Crohn’s causes severe inflammation in the digestive system, and steroids can reduce the swelling and relieve the symptoms fairly quickly. Although a big help in treating flares, steroids come with a long list of side effects, however.

How long of a list?

Typically steroids are used in short bursts because of the side effects. In fact, the longer you are on them, the more they affect your body.

Common side effects can include trouble sleeping, increased appetite and weight gain, irritability, bruising and acne. Usually these manifestations are mild and go away quickly. But the longer you are on steroids, the more likely you’ll experience these effects.

When you have a lot of steroid bursts, or ones that last a long time — more than a few weeks — the drugs can lead to osteoporosis or cataracts. I found out the hard way.

One burst too many

Photo by Lisa Burks.

I have taken steroids off and on my entire life because I have severe asthma. It wasn’t until I was 18 that I began staying on a constant dose of prednisone because my asthma was so bad.

I was wearing oxygen in a wheelchair, my lungs functioning at 30 percent of what they should have been. I was receiving both oral and IV steroids, which worsens the side effects, so I was in and out of the hospital.

The steroids were taking a major toll on my body. In fact, it was apparent to anyone who looked at me and knew anything about steroids that I was on a lot of them. I gained over 100 pounds, had severe moon face, bruises all over, was weak and suffered from insomnia. By age 20 I had developed cataracts and been diagnosed with osteopenia, the beginning stages of osteoporosis.

I had been on prednisone for five years when I started having deep bone pain. I went to stand up one day and felt a pop, followed by pain. At first I thought it was a sprain, but the scans came back showing avascular necrosis (AVN) in the joint.

Avascular necrosis is a lesser-known severe effect of taking high doses of steroids too long. It involves blood no longer flowing to a joint, leading to bone marrow dying and the joint collapsing.

Within two years, doctors found AVN in my right elbow, both hips and both shoulders. I was 24 when I had my first joint replacement: my right hip. The pain was horrible, and took about five months to recover from.

I didn’t have much of a break because the next year I needed both my shoulders replaced, just 7 months apart.  In the past eight years, one by one my joints were replaced with titanium prosthetics. Several of the prosthetics either broke or dislocated, requiring me to have repeat joint replacements. I have had eight replacements so far.

All you can do is keep moving forward

In 2013 I had a procedure called an bronchial thermoplasty that has really helped me control my asthma. My lung function rose to the 80 percent range, and today I’m able to walk without oxygen.

Best of all, I was able to start tapering off my prednisone. In fact, my doctors were planning to get me off steriods completely. I was three weeks away from that happening when fate stepped in, in August 2014. That was when my journey with Crohn’s began. Ever since, the steroids I’ve taken have been to help with Crohn’s. I am still on prednisone — but at a very low dose.

This is not meant to discourage you from taking a steroid when you need one. Steroids can mean the difference between life and death sometimes. Short bursts when required can be perfectly safe. Steroids can be a miracle drug, but using them can also be a Catch 22.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

6 comments

  1. Robin Jackson says:

    I have a love-hate relationship with steroids!! All of a sudden my knee slipped out of place & is giving me troubles, besides all the other side effects I’m experiencing.

    • Lisa Burks says:

      I’m so sorry to hear you’re also dealing with all the effects steroids bring! It’s tremendously hard taking a medication you know will help you, but does such damage. Im also sorry to hear about your knees!! That sounds painful! I hope you are able to stay away from them as much as you can and that you start to feel better!

  2. Matt says:

    Thank you for sharing your experience. I have taken Prednisone for my Ulcerative Colitis and completely understand the benefits and severe side effects of this drug. Keep up the faith and best of luck to you. You are truly a remarkable person.

    • Lisa Burks says:

      Thank you very much! I appreciate your kind words, it means a lot to me. I am truly sorry that you too have experienced what Prednisone can do to the body. It really is double sided drug. On one hand it helps treating remarkably with conditions like IBD, but has its own nasty affects. I know I didn’t list them all. I had to shorten the article because it was over the word limit. It’s like trading one problem for another. I know it can mean the difference between life and death. You too keep your faith and stay strong!!

  3. Inna says:

    Hi Lisa, my name Inna and I do understand how you are feeling. I was in the hospital back in December of 2014, and was given steroids for 2 weeks but on day 3 my hips started to killing me. so after going home after 2 weeks in the hospital I could not walk without pain any more, I started to have pain all over my bones, going back and fort to the hospital and they telling me that there was noothing wrong with me that it was all in my head. Well in November I went to hospital and told them I’M not going anywhere untill they tell me what is wrong. And in 2 hours I had all the doctors running all around me, cause both my hips were gone and I needed total replacement for both of them. At the end of 2015 my knees and shoulders started to have that same horrible pain of necrosis. Had MRI and now I need both knees, shoulders and elbows so far. and I’m only 40 years old when all this started. Now I’m in bed most off the day on the pain killers, no life—JUST PAIN. Did you try to do to lawyers? and if you did what they said? My lawyer told me that there is nothing he can do, but my life is ruined, my kids have to help me around, dissability is not enough,, and I can’t go back to work. And now I”m waiting for the body scan to see how much demage was done. Hope you feeling better. Prayers with you!

    • Lisa Burks says:

      I am so sorry to hear about all the stress and pain associated with both Crohn’s but also the horrors of Avascular Necrosis. It’s a horrible effect of steroids and is not specifically a side effect the doctors warn you about. I swear Dr.’s give steroids out, such as Prednisone,3 like candy! Joint replacements are pretty hard to recover from. My first was when I was 24 back in 2009. I certainly wasn’t expecting to ever hear the words “joint replacements” so young. I know EXACTLY what you mean by living with pain everyday. I used to have to take pills to help with the pain for the longest time but I hated the effects. I started seeing a Pain management doctor and that was probably one of the smartest things I ever did for my pain. They ended up putting me on a Fentanyl Patch. It slowly releases pain medication throughout the day, and you just change the patch every 72 hours. It made the world of difference for me! I did end up going to on a higher dose, the doctors tend to start off on a lower dose and go up gradually until the dose that is most therapeutic to manage the pain. I can still take the pain pills for breakthrough pain if needed. You should talk to your doctor about the patches. Really, it helped me be able to get up and out daily. I still cannot work because I’m disabled. I initially applied for SSD but was denied, so I got a lawyer to help get me approved for SSD, which was approved in about a month! As for finding a lawyer about steroids causing my body to essentially turn on me and bones collapse, however they told me that there was nothing that could be done because if you research the steroids completely, it shows there is a minuscule chance of developing AVN, but is mentioned in fine print. Because of that, the steroid manufactures are not liable. I think its wrong on every level! Steroids stole my 20’s away from me! I hope that your scan comes back with as little amount of necrosis as possible!! Please do let me know how things turn out! And look into the pain patches! It made a big difference. Prayers for you as well!!

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