Acute steroid myopathy

[Body_bonkers]

Finally spoke to NHS rheumatologist today (second consultation) and been advised that I don't have PMR because of my age, normal blood work and non response to steroids. Words cannot express my frustration to be still having this same conversion nearly two years since starting symptoms, particularly when I recently had letters from private and the same NHS rheumatologist suggesting it could be PMR. Now got a fibromyalgia questionnaire to fill out and getting X-rays of chest, shoulders and pelvis.

This 'non responsiveness' really rallies me - 90% of the pain/stiffness went in hours when nothing else had worked. It is my belief the symptoms only come back because the dose is reduced too quickly. It is true I have been on relatively high dose of steroids (20 - 50mg) now since March 2023 but this is in part because of the waiting list and GCA like symptoms. There is always some residual stiffness in the hips and shoulders however but virtually all the pain and fever continues to be relieved and I did improve again on the recent 10mg increase. I still have fatigue but it is different - it generally occurs upon activity rather than me just falling asleep doing nothing.

I have a theory but only time will tell. One of my many Dr Google searches stumbled accross an article on acute steroid myopathy which presents as specific stiffness in the hips and shoulders and aside general absence of pain, is very difficult to distinguish from PMR. It is usually confirmed by lowering/stopping steroids which should bring relief. Although I've found no improvement yet, perhaps the dose has not been dropped enough. I am therefore wondering it anyone has found hip/shoulder stiffness to actually improve on reducing steroids and would be interested to know at what dose ?

[PMRpro Ambassador]

Strange concept of "non-response"! Hey-ho ...

[Body_bonkers in reply to PMRpro]

Yes - doctor is possibly not listening to patient !

I know steroids help with a lot of things but correct me if I'm wrong but isn't the rate of response pretty unique to PMR ?

[PMRpro Ambassador in reply to Body_bonkers]

Not sure about unique, but it is very characteristic. Some doctors don't get that you need ENOUGH to get the quick response and that it doesn't cure, just manages but it only manages well if you take the right amount - go too low and the symptoms reappear.

[LynnWeed in reply to PMRpro]

Yes. You are right.As of now, there is no cure. Get the inflam down, deal with the pred and get the dosage correct.

That seems currently, what we are doing.

I had GCA for three years - still have flares.

Pred works, then there are months of dealing with the gca and pred dosages. Can be difficult.

Some dr s are impossible. Keep going until you find the right rheum.

This site gives the best information on reducing pred, to get the results you want. It can be difficult, but most of us have done difficult work - I am a litigation paralegal - the work wasn t easy but I did it. Same w this. This site's Pred reduction system is one of the best. Would try it. It seems your system is a little different than ours- in the states, switching rheums not that easy in U.K.. Would try -- may be a big help. Keep the faith and keep researching. In support. Lynn

[PMRpro Ambassador in reply to LynnWeed]

"That seems currently, what we are doing."

What WE are doing - but not what a lot of doctors are doing ...

[Body_bonkers in reply to LynnWeed]

Thank you for your supportive words LynnWeed. Afraid options are limited in terms of choice of rheumatologists but the basics of managing PMR are just not being followed anyway. GP's started reducing my dose weekly and straight away with rheumatologist every fortnight - current medical guidance and the experienced people in this forum suggest that is too fast so have even less faith in their diagnostic capabilities