by Ed Tobias | January 2, 2023
My hips have hurt for several years. Right now, it’s just a dull ache. But there have been times when it has been a shooting pain.
Hip pain isn’t necessarily connected to your multiple sclerosis (MS), but it could be. It might be caused by alterations in your gait because of MS spasticity, muscle weakness, or problems with balance. Sitting for long periods of time or changes in posture could have an impact. It might also be caused by one of your MS treatments: steroids.
Is it the MS or the treatment?
I was diagnosed with MS in 1980. Way back then, there were no disease-modifying therapies (DMTs). The only treatment was high-dose intravenous steroids. In my case, to treat a relapse, I received three to five days of Solu-Medrol (methylprednisolone), followed by a week of tapering down using the pill prednisone. Over the next 10 or 15 years, until the first DMTs were approved and I started being treated with Avonex (interferon beta-1a), I must have had three or four courses of steroid infusions.
I received Solu-Medrol again in December 1997. I was being treated with Lemtrada (alemtuzumab), and the protocol called for steroids prior to the Lemtrada infusion on each of the five infusion days. I received steroids prior to my second round of Lemtrada over three days in April 1999. Both treatment rounds were followed by an oral taper with prednisone.
Case studies
In a recent post on his blog “MS-Selfie,” neurologist Gavin Giovannoni wrote about a 39-year-old man who developed right-hip pain three months after his second round of Lemtrada. Two months after that, his left hip began hurting. After an MRI, an orthopedic surgeon diagnosed the man with bilateral avascular necrosis (AVN) of the hip. The patient expects that he will need both hips replaced, and he believes the steroid treatments are responsible for his AVN.
“Professor G,” as Giovannoni refers to himself, discussed the case of another person with MS who developed bilateral AVN of the hips after only one course of high-dose methylprednisolone. He also pointed to a case study of five other people with MS who had received steroids and were diagnosed with AVN. In these cases, the head of the thigh bone was affected.
Neurologists should discuss AVN with people with MS
In all of the cases of AVN cited by Professor G, the diagnosis was delayed. AVN can develop without any early symptoms. Later, pain is felt when weight is put on the bone, as was the case with my hip. My pain was very sharp, but it eased after treatment with gabapentin, which is used to ease nerve pain, followed by physical therapy.
A few years ago, Professor G conducted a survey that reported over 75% of respondents had not been told that AVN can be a complication of high-dose steroids. He thinks people with MS should know that before steroid treatments begin, and I agree. That knowledge probably wouldn’t have changed my mind about receiving steroids. But it would have allowed me to be alert and quickly address any AVN symptoms.
If you’ve been treated with steroids, were you told about AVN? Would it have made a difference to you?
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