avascular necrosis shock!!

[anutycrixp]

I posted about enlarged lymph nodes in neck and axilla back in June.I was also struggling with left shoulder pain[on top of p.m.r!].shoulder has deteriorated alarmingly since then,I've had an X-ray, ct scan and biopsy of nodes has revealed no pathology thank God.I am awaiting"detailed "m.r.i. scan of shoulder next week as orthopaedic consultant has shown me avascular necrosis of humeral head on X-ray and c.t scan,He said I need a shoulder replacement.He and consultant haematologist think that inflammation etc in shoulder have influenced the swollen lymph nodes.I asked how? why? as no history of shoulder injury...he said that it may be due to steroids ,a rare complication.I am shocked,horrified can't believe this could happen.What about other joints? The pain and disability in shoulder has advanced so rapidly I can accept surgery,has anyone else had one? I dread more pain etc..do I stop steroids? I've tapered down to 1mg now after two and a half years starting at 20mg,I was so pleased at the success of steroids therapy.Upset and bewildered,but relieved that no pathology in virchows nodes etc!

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this.

I had a shoulder replacement in February this year, due to osteoarthritis.

It’s mending nicely, no pain on normal activities or sleeping (thank goodness) but upward mobility is still a bit difficult - probably not helped by CV cancelling physio before complete.

You need to discuss steroids with

a. Rheumy - you cannot just stop, and

b. Surgeon and anaesthetist regarding operation at pre-op assessment.

[PMRpro Ambassador]

Are you on any other medication?

It is a very rare complication with steroids - we do have several shoulder replacement people on the forum but in 12 years on multiple forums I haven't come across avn due to pred. Bisphosphonates yes ...

At 1mg you could stop the pred - but a lady on another forum was on 1mg when she had her hip replacement and was advised pre-op to stick where she was until the op was done and dusted. All went very well. I don't think it is worth the risk that that 1mg is between you and a flare of PMR and there are quite a few who have made that discovery - make it when you aren't trying to recuperate from surgery that needs physio!

[anutycrixp in reply to PMRpro]

thank you,I take omeprazole,gabapentin,tramadol and citalopam.I have suffered chronic pain since 1995 following spinal surgery and ended up on this drug combo long before p.m.r struck in april 2018,then started steroids.I will have m.r.i scan 1st September then see orthopaedic surgeon again to plan treatment.I will calm down and compile a sensible questionnaire for him.I was just taken aback to see how the shoulder bone was and never imagined I would ever need any joints replacing!!!Both consultants [heam and orth ] agree that it is a bad response to steroids.I do not want to put others off taking this treatment however,they said it is the only treatment for p.m.r and avn is rare indeed,but they have come across it.Yes,sh*t happens.thankyou for your advice.

[Artsister]

I had avascular necrosis of the hip— I didn’t know it was a side effect of prednisone. I kept telling my rheumatologist I was having hip pain and she ignored me. I ended up having to have a hip replacement. It made me very sad. My sister-in-law had avascular necrosis of the knee, she used crutches for 3 months and her artery opened up again and she didn’t need surgery.

My PMR was gone for 3 years, but I have it again, maybe stress from Covid 19– not happy about being on prednisone again, with its many side effects.

Wishing you the best!

[anutycrixp in reply to Artsister]

thank you,I too am sad to hear your story,I hope you remain as well as can be on prednisone,after all it is the only treatment forP.M.R and must be taken.Good luck!

[RiverKings]

Avascular necrosis is a rare but known complication of steroid toxicity. As a trial lawyer, I once represented a woman who needed hip and shoulder replacements after being subjected to massive doses of prednisone. However, she had early evidence of problems, like Cushing’s Syndrome, that went unheeded. A direct cause is hard to establish because AVN can also be caused by other things affecting blood flow. Your steroid regimen doesn’t sound like you were on extremely high levels, so I wouldn’t conclude that was the direct cause. Depending upon the MRI results and your other health concerns (PMR), your doctors should be able to counsel you on appropriate levels. It’s also related to how much cortisol your adrenals are producing, which can be measured (but often isn’t) with various levels of steroids. Again, everyone is different. AVN is something to be taken seriously and often replacement surgery is the best treatment because there is inadequate blood supply to support natural tissue. Best wishes for your test and treatment.

[anutycrixp in reply to RiverKings]

thank you.yes it is a shock because I started on 20mg of prednisolone 2 years ago which was appropriate and successful at treating P.M.R.I was able to reduce to 10mg and after about a year have been tapering off and now on 1mg.It seems such a modest dose overall.The consultants are not rigid but suggest AVN may be attributed to steroid use.They also pointed out that steroids are the only treatment for P.M.R.Rock and hard place! We may never be able to attribute my condition to any one cause .I was just so shocked at the time but now I need to face the facts as known and get this shoulder treated whatever the cause,it is so painful and such restriction of use in my left arm.it is deteriorating rapidly now so I would welcome a replacement !! Thank you so much for your helpful reply.

[PMRpro Ambassador in reply to anutycrixp]

It does have to be remembered that it happens without pred too - and even more with alendronic acid which they also push on us and which is, arguably, less essential than pred.

[PMRpro Ambassador]

Except being Cushingoid isn't a disease in itself, it is because of the presence of excess corticosteroid. When that is endogenous steroid, due to a medical condition such as a tumour or excess growth of the pituitary and that is ignored then fair enough it might be negligence but for us it is generally clear that excessive exogenous corticosteroid is to blame. And it may depend on the steroid used - I have never demonstrated Cushinoid signs with prednisone or prednisolone but a couple of months of methyl pred did it nicely.

[RiverKings]

My commentary was not meant to declare the AVS is always caused by excessive corticosteroid. Rather, that they CAN produce cause or contribute to AVS and Cushing’s. Other drugs, or conditions or injuries, can also produce or contribute to AVS. The case I referred to involved massive (200 mg day and up) for a long period of time and it still required expert opinions from a pharmacologist, orthopedic surgeon, vascular surgeon and general practitioner to tie it down. It looks like anutycrixp received a common dosage and reduced sensibly. For a patient (unlike a claimant in a lawsuit), the exact cause need not be known. The emphasis is to treat it and get well, which I certainly hope happens here. Best wishes.