Many of us began our medication journey with multiple sclerosis (MS) with a three- to five-day round of infusion therapy with corticosteroids, usually prednisone, dexamethasone, betamethasone, or methylprednisolone. Often, we found out we were headed into an infusion room moments after hearing “You have multiple sclerosis.”
Steroid Side Effects Were Not Top of Mind at First
The list of short-term and long-term side effects for this category of drug are long and mostly overlap between specific medications. But many (if not most) of us weren’t really thinking about long-term adverse events at that point. We were still reeling from the news of our MS diagnosis and just happy that the doctors might have something that would help us get back to where we had been before hearing those words.
We probably didn’t even spend much of our first months or years thinking about steroids, other than how they got us back to some semblance of our old normal, even if for just a while.
We spent much more time researching the disease itself, the disease-modifying treatments that were on offer to us, and then the staggering cost of those same prescription medications.
We might have noticed some niggly bit or another related to steroids — racing pulse, insomnia, weight gain, headache, and maybe even a recurrence of teenage acne. (Oh, the joys of MS medications.) But long-term side effects likely wouldn’t have shown up yet.
Steroid Aftereffects: Avascular Necrosis
I had five exacerbations in the 18 months after my diagnosing MS attack. All my infusions were five-day goes, so that means that in a year and a half (548 days) I had 30 days of corticosteroid infusions. That’s like spending 5.5 percent of that year and a half on steroids.
Perhaps I should have anticipated some consequences.
Within a couple of years, I began having severe pain in my hips — mostly my right hip. Trips to general practitioners and then to orthopedic surgeons revealed that I’d developed avascular necrosis (AVN), sometimes called osteonecrosis, which is the death of bone tissue due to a lack of blood supply. It is commonly caused by use of high-dose corticosteroids.
The first surgery I had was a little experimental, and it was performed in a teaching hospital. The surgeons inserted a metal strut into the head of my femur to try and support the dying bone in my hip joint. AVN can result in the collapse of the ball of the joint, and this team was trying to stave off said collapse.
It didn’t work.
Within a year I was back (to another surgeon this time) to have that strut removed and the whole hip replaced. It was a significantly more invasive surgery, as they first had to remove the strut, which had already cemented into the femur, before replacing the joint and filling the hole left by the metal strut with bone grafts.
Recovery was a long ordeal.
I’m Due for a ‘Revision’ Hip Replacement
Well, that was about 17 years ago, and now my body is telling me that it’s time for what they call “revision” hip replacement. I’m told it’s a longer, more complex procedure with additional recovery time relative to a primary replacement. Lovely.
It’s been well over a decade — nearly two — since I’ve been administered infusions of corticosteroids. And it must be said that any damage and pain I am now experiencing in my hip is down to wear and tear on the prosthetic and is not related to steroid use.
But it’s possible I wouldn’t have had to consider this revision surgery on an artificial hip if steroid use hadn’t caused the need for the replacement in the first place.
Would I Have Done Anything Differently?
Would I have declined steroid treatment when I was at the lowest points in my MS journey because it might lead to the need for joint replacement?
Not in the condition I was in at the time. There were times when I couldn’t walk or I couldn’t stand, when I was incontinent or I was in another world altogether. Even knowing what I know today, I would likely still have taken them.
But I still think the potential for long-term aftereffects is something that everyone should be aware of when we sit down in the infusion chair for a little bit of relief.
Wishing you and your family the best of health.
Cheers,
Trevis
