Could Your Hip Pain Be Related to Your MS Steroid Treatments?

Columnist Ed Tobias discusses recent observations by a neurologist blogger

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.

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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? Please share in the comments below. You’re also invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Claudia N Chamberlain

This is very interesting. Never had hip troubles until recently.I sleep on side and they ache after a little while. Dx in 1991. Had several rounds of intravenous solumedrol for weeks at a time. I have refused steroids for many years, but wonder if damage was done. Thanks for post.

Ed Tobias

Hi Claudia,

I'm glad my info was useful to you and I'd certainly mention your hip pain to your physician. A bone scan should tell you whether there's been any hip damage and there are medications that can be used to try to limit the deterioration.

Laurie

I too developed AVN after steroids for my MS in both hips,both knees and in the femur(the long bone) of my right leg. It caused huge Baker's cysts on the back of both kneed as well and caused a vicious cycle of pain that I hope to never experience again. It took 3yrs but it did heal and I was extremely grateful as back in 2009 there were very few total hip/knee replacements going on nationally and core decompression was in its infancy in the Chicago area. I'm left with bones that are in pretty bad shape and still have pain but it's no longer completely out of control. I'm small and fine boned but it was a long recovery and I would urge caution with steroids. No MD told me of that possible risk and I feel patients should be made aware

Ed Tobias

Hi Laurie,

I'm sorry you've had all those problems. You're right...people need to be aware of the problems that continued use of steroids can create so they can make an educated treatment decision.

Terry

Hi Ed:

It seems use of steroids in MS can affect the body in so many different ways many years down the road. I have hip pain daily, but attribute it to my crazy gait, although some days it can bring me to my knees when my hips don’t work properly. My Prednisone dosage when first diagnosed was 60/40/20 over 3 weeks. That continued intermittently for many years when exacerbations hit.

Although no active lesions in many years, the decline has been steady MS-wise. Additionally, my bones are a mess requiring annual infusions and warnings not to fall or lift anything over 8 lbs. Granted as we all get older, women in particular suffer from osteoporosis. But according to my Doc, mine is severe and he attributes it to Prednisone. The past 5 years, I e been hit with 6 squamous skin cancers that my dermatologist also attributes to Prednisone.

Will keep your article in my hip pocket for my visit to an orthopedist!

Thank you.
Terry

Ed Tobias

Hi Terry -

I'm sorry your having those problems. I haven't heard about a possible connection between steroids and squamous cell cancer, so thanks for that info.

I've heard of people carrying a lot of things in their hip pocket, but not one of my columns. Don't forget to take it out before washing those pants.

Patricia Glatfelter

I too developed MS prior to the days of DMT's and had multiple courses of IV steroids followed by oral tapers. In the past 10 years I have had only a 5-7 day course of oral steroids twice. I was diagnosed with MS in 1991. I have had a total knee replacement and have intermittent bilateral hip pain which is generally more painful on the total knee side. I also have osteoporosis right greater than the Left hip. I worked as a physical therapist for 40 years and was very cognizant of my gait deficiencies and tried to exercise appropriately during my decades with MS. But I was no saint. I have to feel that the joint deterioration and osteoporosis development is related to my asymmetrical weakness and "funny" gait that evolved over the years. I am now 68 and the aging female body also plays a role I am certain in the degree of osteoporosis.

Ed Tobias

Hi Patricia -

I'm sorry you've had those problems. Being a PT can mess up your body even without MS. I know...I'm married to a retired PT!

I have no doubt that at age 74, and living with MS for 42 of those years, my asymmetrical weakness and awful gait have combined with whatever the steroids did to my hips. My aging male body will just have to live with it.

Nancy Rochelle

Thanks Ed

That’s really helpful to know, I would never have thought of that connection!

Ed Tobias

Hi Nancy -

That you thought this was helpful. Helping folks with MS is the primary reason I write what I write. I hope your new year is a good one.

Helen Schultz

I was treated with high dose steroids twice at the beginning of my MS journey, October of '95 and again in January of '96. Don't know if it would have changed my mind as optic neuritis was the main reason for the treatment. But I definitely have no plans to do them again as my husband and I did not like what they did to me. Now to know that they may have been the cause of my hip pain (been experiencing for years), I will talk to my doctor about AVN!

Ed Tobias

Hi Helen,

Every treatment is a balance between benefit and cost in terms of side-effects. I'm glad I had steroids in my early MS years, as they reduced my symptoms. For many years, however, I've avoided them but I would take them, again, if it was the best way to treat an ailment.

Penny-Marie Wright

Is Rebif considered a steroid? I was on it when first diagnosed with MS. Can't remember how long I had to do a round of 7 needles in different places but then had to quit as affected my liver. I'm told I have Osteoarthritis in my right hip now but don't know if Rebif is a connection or not because it wasn't done in my hip, closest was my upper leg.

Ed Tobias

Hi Penny-Marie,

No, Rebif is not a steroid. It's a disease-modifying therapy in the beta 1-a group. Osteoarthritis can occur simply due to someone's age, especially in women, without a connection to any medication.

Deanne

I was wondering about my gait. I had steroids in 1993 from a bad atttack whuch left left side paralyzed. It was a miracle drug. In 2009 had sensory nerves hands affected another round of IV steroids, 2012 walking and balance which was a miracle drug again. In 2014 started using a cane because of drop foot right foot, ankle and leg. I noticed my left leg and hip collapses downward and have a trendelenberg ? Gait. Read that is from damage to L4. I had MRI of lumbar and do have eccentric disc bulge and damage. For years my Neurologist kept on saying it is MS but kept on telling her my gait is not a MS gait. Went to a private Neuro Spine Surgeon and said too difficult to know if it is MS or L4 compression disc bulge. He went to University with Neurologist and getting a second opinion. Doctors do cover up for other doctors mistakes and misdiagnoses.

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