I just learned about osteoarcosis

[Amkoffee]

 So my right hip has been really hurting for the past month but an x-ray did not show any fracture so I was sent to an orthopedic doctor. Since I have severe osteoporosis a stress fracture would not be surprising. The doctor has ordered an MRI but mentioned the possibility of osteonecrosis due to long-term steroid use. hy have I not heard of this risk before?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that - info from US College of Rheumatology-

Fast Facts

Osteonecrosis can cause severe pain and disability, much like arthritis does. Early diagnosis and early treatment may improve the outcome.

Osteonecrosis may result from use of glucocorticoid (sometimes called corticosteroid) medicine or from drinking too much alcohol.

Though osteonecrosis can occur in almost any bone of the body, the hips, knees and shoulders are the most common sites affected.

Fully article here -

rheumatology.org/I-Am-A/Pat...

[Amkoffee in reply to DorsetLady]

I appreciate the link. I read thru it and it seems to concur with others things I've read from doing Google searches. I just hope that's not what this is.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Hope it’s not as well…🫰

[piglette]

I remember reading that steroids can cause AVN, but it is very rare. I have come across some people on the hip forum who had it and needed hip replacements.

[HeronNS in reply to piglette]

One of the first people I "met" on the Patient forum where I hung out for years was a woman who developed avascular necrosis not very long after starting pred, and not at a particularly high dose (standard PMR treatment). Very worrying for a newbie I have to say. Jaw necrosis is also a potential side effect from some bone meds (when taken for too long) which seems ironic considering they are supposed to make bones stronger. Young women working with phosphorus, making matches, were prone to develop "fossy jaw". Bisphosphonates.... I think it was knowing this which made me so utterly desperate to find another way to manage my (mistaken) diagnosis of osteoporosis.

Just before I posted this I discovered this article:

ncbi.nlm.nih.gov/pmc/articl...

[piglette in reply to HeronNS]

I think I remember someone with AVN on this forum too now you come to mention it.

Phossy jaw was a horrible disease. It was called phossy jaw after the phosphorus used in making matchsticks. In fact it was still around at the beginning of the 1900s.

[Blackcat1M in reply to HeronNS]

This is what worries me as I know my doctor and theRadiographer are pushing for me to take bisphosphonates.On the print out I got for my results the radiographer says if I declined treatment there is little value in follow up-/providing a rate change.

[PMRpro Ambassador in reply to Blackcat1M]

I'm blowed if I can see the logic of THAT! It works both ways. If things were to change drastically you would consider changing your decision - I would. I just object to being told you need it now, just in case.

My bone density was fine 2 or 3 months into pred so I declined bisphosphonates. I have had 4 dexascans now - all still firmly in acceptable range. That means I know that nothing has changed there. Whether they have a protective effect against the more general effect of pred and fracture risk I don't know. But 13 years ago I was given AA - took 4 tablets and stopped. I haven't broken anything yet. On that basis I didn't need it "just in case".

[Longtimer in reply to Blackcat1M]

Have struggled with this decision for last few years, but having Osteoporosis, and now being told it has worsened I will have the infusion.....tried a few biophosphonates, but many have me chest pain even when following instructions...had to stop Adcal because it gave me "sludge" in my stomach....still dealing with that now!.....very hard to know what to do at times.....

[Exflex in reply to Longtimer]

“Very hard to know what to do at times…” Took the words out my mouth!

As I wrote recently, I’m on 2.5mg Pred (nearly: more 2.5 than 3) and still taking Risedronate 35mg because the GP and Rheumatologist said so. Been taking Bisphosphonates for two and a half years. Really confused…

[Longtimer in reply to Exflex]

Have you ever had a DEXA scan?

[Exflex in reply to Longtimer]

Yes 2 years ago, and the radiologist queried one of the readings on - I seem to recollect - the pelvic area, but passed it off as being ‘normal’. At the time I had been on Pred for 6 months (starting dose 15, but probably 11mg at the time of the scan) and bisphosphonates for 5 months.I’m wondering whether I could ‘self medicate’ and reduce Risedronate to once every 2 weeks instead of every week. Or see if there’s a lower dosage for weekly administration.

[Longtimer in reply to Exflex]

Hope someone can advise you....

[HeronNS in reply to Blackcat1M]

AVN really is vanishingly rare from taking pred for PMR or GCA so I don't want to worry you to the extent you not take a bone medication - if you really do need that medication. That's the thing, isn't it? You don't want to be taking a pretty serious med unless it really is necessary.

[Amkoffee]

I thought I knew of all the side effects which is why this one surprised me. Live and learn!

[anutycrixp]

Yes,I had osteonecrosis of humeral head i.e in my left shoulder.Pain and disability rapid deterioration ,yes.diagnosed by scans,m.r.i and ct scan and x rays etc.had total reverse shoulder replacement march 2021.cause? probably steroids..I was on them for 2 1/2 years for P.M.R they were very effective on a low dose [5mg] but this was enough to thus affect me! ME, not everybody..it is very rare and unfortunate.I came off steroids prior to surgery and [touch wood] have not required them so far.I have just had my right shoulder replaced 2 weeks ago ,difficult op as tendons affected and bone severely affected,diagnoses probably o.arthritis/necrosis.Again very rapid onset and deterioration.Matching scars! Getting on ok.Both shoulders is rare..being investigated by rheumatologist as c.r.p in bloods is raised. I stress again Steroid induced AVN is very rare so please people don,t start stressing.You certainly know if it,s affecting you and accurate diagnosis is essential.Best wishes ! p.s,I do not drink alcohol nor have done for years! cheers.

[Amkoffee]

My alcohol consuming is very low as it often bothers my stomach. So an occasional drink now and then is it. I've never taken biophosphonates either. Hopefully this will not be osteonecrosis.

[Mistydawn]

Sorry to hear this. Sadly some of the very meds, the bisphosphonates, that we are given to treat osteoporosis can cause osteonecrosis...

[Longtimer in reply to Mistydawn]

It's often said with medication, what we are taking can cause the actual problem.....weird!

[jls93]

Yes osteonecrosis is possible. I had a lesion in my humeral head ( ball portion) and possible contribution to the stem of my total Hip replacement loosening insidiously after 9 years ( not reverse total shoulder). Both sites have be " revised" . I have osteopenia and will behaving a repeat bone density test next month.

[Suedeshayes]

Hi. I too, developed a painful hip, that seemed to happen very quickly. An MRI scan showed vascular necrosis-lack of blood to the hip, which causes the hip to gradually erode. I had a hip replacement and things are much better. My consultant said it was most likely due to a few years on steroids and it is common. I too, had not ever read about this before. An MRI will be able to tell you what is happening. Good luck. I think there is info on this site about it. x

[Amkoffee]

Thank you. I am only 60 and the idea of having to get a hip replacement is concerning.

[PMRpro Ambassador in reply to Amkoffee]

My daughter has just been told she'll need a knee done in 10-15 years, she's not 40 til xmas.

Lot to be said for having one done young - you recover better.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Too true -and they last a lot longer than they used to…

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

One of the easiest replacements to recover from -and better than being in 24 hr pain!!