Listen now (10 mins) | I will now have to have bilateral hip replacements. I was never told about avascular necrosis or AVN of the hip being a possible complication of high-dose steroids. Should I have?
diagnosed at 28 now 31 since then i have had 26 grams of methylpred spread throughout relapses in pulsed doses and probably another 10grams in trailing doses after high dose and hsct, infarct i'm on them now at 60mg a day. I have an almost 3 point improvement in edss on them which fades as soon as im off them. no one can explain why this is how it is for me but the way i see it i'm here for a good time not a long time. there is risks with everything, the cyclophosphamide has a higher chance of giving me bladder cancer which i think doubles or something for the next 10 years ? and the tysabri before that could of killed me with a jcv index of 3.8. it didnt stop me taking either and why would it ? we are all dying and im now dying at a quicker rate than my peers and family regardless of how you look at it so why wouldnt i want to maximise how i feel physically and mentally whilst im here ? i read a study recently which quoted a 22% increase in avn after 9000mg of corticosteroids but i also have a friend with ms that has taken dexamethasone every day 3 times a day for the last 15 years and is still hiking mountains in Scotland in the summer for fun which he equates is 100 percent due to steroids. there is various small studied in spms equating monthly use of steroids to symptom improvement in spms patients sustained over 2 years, is there any dmts that have shown that ? i dont think so... why the sudden scare tactic ? was there something said previously that sparked this though? i have been begging my neuro and now pharmacist to figure out why i improve so vastly on them but no one seems to know or want to know and i cant seem to get in front of a neuro immunologist. the only side effect i have from them is weight gain and a bit of a comedown when trying to come off them. they are infact being taken off of me over the next few weeks by the pharmacist and im dreading life without them. i go from walking my dog, working all day and making dinner to barely being able to get out of bed into a chair and having my partner most nights having to feed me, but because they are so throwned upon its not my choice, the choice unfairly has been taken away from me. but why i ask you ? should it not be my choice to accept the risk of avn etc after all i was given the choice to accept the risk of dmts and chemotherapy and this pales in comparison...
I was diagnosed with PPMS in 2009 and had successful HSCT in 2014, during which steroids were administered (the only time I'd had steroids). I was unaware of the possibility of AVN at that point. In 2016 I was diagnosed with bilateral hip AVN with lesions in every pelvic bone, too. I then had a whole body MRI which showed that I have extensive multi focal AVN and lots of lesions in the long bones too. So far I have had both hips replaced, both shoulders partially replaced and I am now on a surgical waiting list to have both shoulders totally replaced with reverse replacements. The AVN pain is intense - I've been on varying doses of morphine and paracetamol since 2016.
I have had a couple of courses of 3-day IV steroids over the years. I had the risks explained to me before each course and there was also a leaflet that covered the risks, including this one.
I am classed as highly active RRMS , I’ve have had various doses of steroids over the years related to relapses but now had 4 ocrevus infusions where steroids are also infused. I recently developed a severe pain in my right hip which after an x ray was diagnosed as osteoarthritis .
How do I look out for / differentiate AVN ?
I had a similar experience with AVN following Alemtuzamub nearly 10 years ago. I recently had a hip x-ray and the new images showed no further decline in bone health than my initial x-rays back in 2014/15. The possible side effects of high dose steroids were pointed out to me at the time (By yourself!) but the outcome currently brings no mobility issues. My current neurologist says I will need hip replacements at some point in the future but at the moment it's not something that troubles me on a daily basis. I would have made the decision to go on Alemtuzub regardless of the onset of AVN.
I’ve had 5 large doses of methylprednisolone over several years to treat relapses. I was not told about AVN by my team although I subsequently read about it myself. I had all my steroids in menopausal years and subsequently found out I had osteopenia in my lower spine. Since that time I have refused and will continue to refuse high dose steroids. It’s a scary prospect!
I just had my second course of Lemtrada. I don't recall anyone mentioning the risk of AVN. I have osteopaenia. Honestly, I'd never heard of AVN till your selfie. MS teams could put together some documents with information on risks like AVN then give, or email, them to patients? Especially listing symptoms of conditions to watch out for and anything we can do to prevent them. But knowledge of the AVN risk wouldn't have had any effect at all on my choice to have Lemtrada.
I’ve had at least 10 series’s of solumedrol infusions in the 7 years that I’ve had MS. Most last min 3 days, with some over 5 days - each one is 1000mg/day. I also get monthly steroids with my ivig infusions for the past 2 years. My left hip started painlessly & intermittently making an audible clicking sound a couple years ago. Then the pain started about 2 months ago. Within the last month the right hip pain has started and is even worse than the left. I was NEVER told about AVN and now need to fit dealing with this into my already overwhelmed life.
I’m 41 and feel like I’m 81.
I’ve had a three day dose of IV steroids , followed by a trailing dose. Was never told about AVN , or any other complications that could result from their use. Very disappointing.
Are they part of most infusion therapies to avoid reactions? If so this could be a very serious problem that is looming for many people.
Thank you for making me aware of this, and what I need to push for to get a diagnosis.
Is the pain with AVN intermittent?
I received steroids twice in 2015 and then again in treatment with Alem in 2016 and 2017. During this time I saw three neuros, none of whom mentioned this as a common side effect. It wouldn’t have changed my decision to have Alem, but knowing I should be alert to symptoms of AVN would have been super helpful!
Across most of this year I’ve had pain in my right hip that could be awful at night, if I happen to sleep on that side. Nothing I did in terms of appropriate exercises and stretching made any difference.
However for the past couple of months the pain has eased up considerably 🤷🏻♀️
I am unsure therefore whether to pursue this with my GP or not.
Any feedback on symptoms will be much appreciated from both you ProfG and those nod you living with the condition.
Hope it all goes well for your patient with both his hip replacements.
I’m now aware of bone thinning and steroids. If you had allergies you likely had prednisone handed out like M&Ms all your life. I was fortunate in a sense, I suppose, that I couldn’t tolerate solumedrol for MS. I ended up in shock with tinnitus in deaf ear that blubbered like voices all night. As I told the neurologist on call, nooo, it isn’t psychosis! But over a lifetime of steroids, there was no warning of anything, much less AVN. I have severe hip pain now, primarily on the left where I have an old injury. However, I can stand without without severe pain and it sounds like that wouldn’t be the case with AVN. But after listening to you, Prof. G, about this case, and reading what many of you report, I think I should cross fingers and have it scanned. Best to all.
Interesting. I wonder why people don't get told to avoid sugar and salt during steroid treatment because my ms tribe would preach it like a bible. Something about diabetes.
Off topic - I wonder if there's been/will be an off licence low dose naltrexone for ms discussion?
All too common. Possible side affects of treatments glossed over or not talked about sums up my experience . I am unimpressed by the’not enough time’ excuse
This one makes me FURIOUS! I have bi lateral AVN of my femurs. My right femur has been bad for some time. My left was Dx'd recently. It makes me furious that HCPs do not inform us of the side effects and complications that can occur with the long term use of, or high dosages of steroids. I am one that also has COPD and am very susceptible for developing pneumonia with every little lung infection. Starting in 2013 i have had multiple courses of both in hospital IV steroids, plus an at home course of steroids after each bout of pneumonia. In addition, I have had several injections of massive steroids for a herniation in my neck that impedes on the nerve roots that causes massive electric shocks to run down my shoulder and arm. Yes, the injections helped. No one has yet to tell me about this side effect. I also have a mouth full of rotting teeth. This began shortly after starting the first series of IV steroids in 2013. I was hospitalized 6 times over the summer of 2013. The only doctor I have had recently that has even acknowledged this is my pain doctor. I am so disheartened over this. Even sites that are supposed to allow you to be fully informed about anything prescribed, like Drugs.com do not list AVN as a side effect. My question is WHY NOT? How can anyone make a fully informed decision if they do not have the info? It's really infuriating. I wish there was something to be done about this. I have gone as far as writing to the people that run the site, drugs.com and they blew me off and haven't added this as a side effect. UGH!
Interesting. I can’t recall that ever being mentioned prior to starting on Alemtuzumab c. 7 months ago.
Is this a lap of the gods sort of thing or is there proactive protective measures that one can take? Forewarned is forearmed etc.
Having had a dynamic hip screw as a result of a femur fracture 12y ago I wonder if that also puts me at greater risk?
It will be interesting to discuss this with my doctor.