I have a bone to pick with steroids
A columnist relates her years-long struggle with avascular necrosis
Recently, a historic winter storm brought record amounts of snow to the northern parts of the Sunshine State. Some areas of Florida’s panhandle surpassed 8 inches of snow! It has snowed before in Florida, but this level of snowfall and ground cover is a first.
Despite my immense excitement about a snow day, I also realized that this Floridian isn’t cut out for colder weather. In the past, because of my relapsing-remitting multiple sclerosis, Florida’s heat and humidity have heightened my blurry vision, brain fog, and muscle weakness. Yet I now find myself (literally) aching for a return of warmer weather. Instead of my limbs feeling like spaghetti noodles in the heat, an unwelcome appearance of spasticity from the cold has turned my limbs stiff.
I also have a constant, dull pain in my left shoulder, which has intensified in the cold weather. It serves as a constant reminder that my bones have been compromised by avascular necrosis (AVN), a disease that results from a loss of blood supply to the bone.
Holding on to hope while looking for solutions
In 2017, I had to have dual hip replacements after both of my hips were afflicted by AVN. Then, in late 2022, I got another rude awakening upon learning that my AVN battle wasn’t over yet. I was diagnosed with AVN again, this time in my left shoulder. After a marathon of X-rays and MRIs, AVN was also discovered in my other shoulder, as well as my knee, ankle, and wrist.
This particular diagnosis was gut-wrenching and left me feeling disheartened. At the time, after five years of respite on the bone front and six years with no multiple sclerosis (MS) disease activity, I truly thought I was through with lifelong battles. But I realized that you can’t really outrun your health.
While the body is quite adaptable, I believe it keeps score of past treatments. When multiple medications failed to halt my disease progression, steroids became the go-to method for cooling the fire of active MS relapses. I also utilized steroids to wean off my medication before I had hematopoietic stem cell transplantation, to lessen the chance of rebound lesions caused by ceasing certain treatments. Steroids were used during my stem cell transplant as a prophylaxis, and then again to help me recover from secondary adrenal insufficiency.
Although the full etiology of AVN isn’t fully understood, high-dose steroid use is a common cause and is the likely culprit in my case, following a decade of treatment with steroids.
My frustration with MS and AVN stems from the fact that they both significantly impact quality of life, the use of limbs, and mobility, and there is no cure for either of them. Once a bone dies, it isn’t reversible, and it’s usually addressed with joint replacements. In the early stages of AVN, pain-management strategies, activity modifications, and physical therapy can help to slow the disease’s progression.
Unwilling to admit defeat, I’ve spent the last few years searching for treatment methods that not only slow the disease but also regenerate new bone and blood vessels. So far, I’ve tried stem cell injections and a core decompression surgery in my left shoulder.
While past treatments have focused on my shoulders, because they are the most advanced in terms of progression, I’ve recently stumbled upon hyperbaric oxygen therapy as a potential avenue to systemically increase oxygen, stimulate stem cells, and grow new blood vessels.
With limited research, though, the chances of these therapies being successful are unknown. I’m doing what I can to manage the pain and hold on to the hope of potentially saving a few of my affected joints. I’m uncertain if the cold weather spiked my irritability, reminding me that I have a bone to pick with steroids, or if it reinvigorated my motivation to keep trying. But I’m determined to continue searching for new therapies that might breathe new life into these bones.
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.
Judy Smith
I think this is the first of Ms. Crum's writing that I've read. It is packed with more factual information than is typical for postings here, which is great. Frankly, I'm trying to stop looking at this site because it's a painful reminder of a loved one who suffered with PPMS. But it keeps popping up, and I keep getting drawn in, especially by stories like this one that dig a bit deeper into the scjence, Thank you!
Brian Fletcher
53 yr old guy here, diagnosed at 25 with rms... moved to spms 10 yrs later when I became chairbound. Both oral and I V steroids have a big hand throughout my MS history along with many of the DMTs. Most recently, I was given steroids to combat a diagnosis of Ulcerative Colitis, which may have been CAUSED by my use of Kesimpta when surgery for pressure sores prevented travel for my Ocrevus infusions. Right now, my Neurologist is taking a wait and watch tack with my treatment. Your battles with AVN remind me of the importance of bone and joint strength, especially my shoulders with my manual chair and transfers to and from. Thank you for your candidness and efforts in finding ways to deal with and treat AVN.
SHARON L BIVINS MD
I wish more persons with MS would read your cautionary tale. I find (on MS blogs, etc.) that lots of MSers think nothing of taking steroids for almost any increase in symptoms or minor exacerbations. Some get belligerent when they have a doctor who will not prescribe them. I was diagnosed 35 years ago but had symptoms, including a major exacerbation, for at least 15 years before that. I never took steroids; I just "waited out" my relapses. The relapse that got me diagnosed in 1990 was severe bilateral retrobulbar neuritis, but I now have visual acuity of better than 20/20! . I am 74 years old with an EDSS score of 1.5.
Carrie
I got diagnosed when I was 18 way back 1998 and all the doctors were stumped. Anyway the doctor that I had and absolutely loved had me on a saulmedrol regimen for like 23 years and now I’m on kesimpta along with b-12 injections and the walking pill and everything is staying even. I can walk on my own but should use my walker or cane but I’m stubborn. I fell on the 25th and wow I feel it but it is what it is ♥️
Barb
Look into Kevin “The Bone Coach” who also practices functional medicine