Steroid Rage and Pain Management

I have a few problems with steroids. Let's be honest, who doesn't? I've never heard of someone having a flawless relationship with steroids. My biggest issue with them is roid rage; they make me unreasonably angry.

Dealing with rage from steroids

I first realized that prednisone made me prone to anger when my toddler started pushing boundaries. I remember standing in his room and barely being able to control myself from reacting violently to his (normal for his age) behavior, and it scared me — a lot.

I had snapped at my husband a time or two while taking prednisone, but I'd never felt rage towards my son before, and I knew undoubtedly it was from the steroids. I switched to a different type of steroid (methylprednisolone), which helped. Still, I only tolerate it at about half the dosage that my doctor considers effective for resolving lupus flares.

Nonetheless, I refuse to take more while I'm alone with my kids – it's just not worth the risk. This puts me in a tough spot, however, since I usually need the help of steroids when I'm flaring to help me get through physically demanding days with my children.

Steroids by the fistful

After my rheumatologist quit unexpectedly, I found myself in the office of a new doctor who refused to change up my treatment plan – except for practically throwing steroids at me. I left her office with an excessive prescription for them and never returned.

Steroids serve an essential role in treating lupus, but that doesn't mean they should automatically be a first-line treatment or used in lieu of trying different medications. Additionally, steroids have some pretty harsh long-term side effects and can sometimes be quite difficult to wean off.

On the other hand, I had trouble getting my first steroid prescription back in 2017; my doctor at the time refused to prescribe them during pregnancy. I also have friends who've been accused of being addicted to steroids since, for some people, they provide abundant energy and pain-free days.

Must we use steroids to manage pain?

I have not found steroids a great pain management tool for my lupus flares. Sure, they help, but it's never quite enough. Perhaps they would be more helpful if I could tolerate higher dosages.

Furthermore, we know that steroids can wreak havoc on the body. So I asked my doctor: can we change my treatment plan to reduce my need for steroids and/or use something else to manage breakthrough pain during flares? Thankfully, she agreed to both.

She changed my medication to a biologic that has been more effective - reducing my number of flares overall - and she also provided narcotics for those unbelievably painful flare days (I'd like to note that I have tried and failed many other pain management strategies before reaching this point).

On a typical flare day, I'll take a small, tolerable dose of steroids and a small dose of narcotic pain meds in the morning. This allows me to function and take care of my kids when rest isn't an option. Later, after my husband gets home, I have the option of taking a second dose of pain meds if I'm really suffering. Then, when the flare ends, I stop both meds.

My pain plan is working well

I have fewer flares, and my pain is often well-managed; this arrangement fits my life with young kids. However, not many people have these options. Some people can't get their doctors to prescribe certain medications or get their insurance to pay for them. I've even been personally attacked for choosing to use narcotics for my chronic pain.

I am not ashamed. Why should I be? I don't want to lose precious days with my family due to excruciating pain levels. I am grateful to have a say in how my medications are managed. I don't have to worry about losing my temper with my kids, and my doctor is on board with safely helping me be the best mom I can be during my lupus flares.

Do you experience side effects from steroids? Do they help keep your lupus pain under control if you use them?