I saw the orthopaedic surgeon this morning and I have been put down for a hip replacement. I asked about being on 19mg pred and he said "No problems, we see patients all the time on steroids, we can cope" I feel that I have at least got somewhere today regarding my hip. I am to have physiotherapy before the operation and have been given exercises to strengthen my knees. Hopefully I can lower the steroids even more by the time I should have the operation.
Follow up to Hip replacement whilst on steroids - PMRGCAuk
Good news - hope all goes well!
Great - sounds like a thoroughly sensible surgeon.
Don't struggle though - it is easier for you and them if you are stable and well.
I hope to find a way to be able to reduce a bit by then but so far Hydroxychloroquine, Methotrexate and Benepali haven't worked.
Is that for PMR or for the RA? Etanercept (Benepali) and its like are expressly mentioned as having no benefit in PMR. The trial done with anti-TNF drugs was abandoned early because of no response and adverse effects. Hydroxychloriquine (Plaquenil) also has not been shown to have any advantages in PMR.
On the other hand - I think I might ask for an opinion from another rheumatlogist.
Ever since I was refered to hospital by my GP as my pmr was A Typical they have refused to accept I have it. I have been told it is various forms of arthritis and the last one I saw who told me to stop the Benepali said that he thought it was all OA which is ridiculous. My GP thinks I have had too many opinions as I have seen so many rheumatologists.
My attitude is if pred helps the pain I don't care what they think I have, I will just keep taking the pred. Last time I saw my rheumatologist she said you don't look like someone with PMR. I am not sure what I was supposed to look like, green with a prehensile tail perhaps!!
With you all the way there piglette. It beats me why they can't accept that if it is an autoimmune disorder they can't cure it anyway and management is the name of the game. If the only thing that manages it is pred - so be it. It gives me a life as long as the whateveritis is ongoing - and the evidence so far is that it isn't thinking of going away any time soon. I appear to part of the really unlucky 25%.
I spoke to a nurse who in February didn't think she could bring my appointment forward and told me to up my steroids to 20mg from 17.5. That helped a lot and then I got that appointment to see the rheumatologist who thought I didn't look like someone who had pmr or RA. How can you though if you are taking the right dose even if it is too high in their eyes?
Ballybiscuit, I would love to know what we should look like. The mind boggles. I am not sure that diagnosing someone with PMR as how they look is that scientific.
I have seen medical literature and a blog by a GP (the one that led to me working out what it was I had in fact) where they commented the typical PMR patient was pale and tired looking, very down (etc). Now I wouldn't say one was necessarily not fatigued and things when on pred - but it produces a blooming farmer's wife complexion. Which leads people to make false judgements...
I am just not convinced that if you don't look pale and wan you are not supposed to have PMR. There is a lady down the road who has just moved in, who looks a bit like that and trundles around on crutches, has innumerable MRI scans, CT scans, blood tests etc etc. Everyone is beginning to wonder if she is a hypochondriac, as she is also always phoning the police to complain about people doing all sorts of nasty things to her including the poor paramedics she keeps calling out. I initially felt sorry for her and now she is on the phone to me an hour at a time. I think others have fallen in the same trap.
I have been unable to get out since 2013 to walk further than down the garden or round part of a supermarket if I am taken as I hang on to the trolley to help me. When I had my hip biopsy done my neighbour saw me with crutches afterwards and offered to shop each day for me. I thought that kind but funny as I wasn't in any different situation except for the crutches and she knows what I have wrong. My husband shops for us but I did let her get a few things as I didn't want to turn her down when she was offering.
Oh no, couldn't agree more - but that does appear in the medical literature that has so much in it that bears no resemblance at all to what we really experience. In that sense, there's no wonder they struggle to diagnose us.
Though there is the study in the papers today saying that GPs fail women - they see them an average of 10 times to be diagnosed (mainly female problems was mentioned but it is all the same).
Bet the paramedics love her - especially if she complains about them. The police and they will have the number flagged though.
If it is various forms of inflammatory arthritis - one of those other drugs should have had some effect. They didn't. But to say OA????? What are they like - OA doesn't affect muscles...
I know and to say "Stop Benepali and lower your steroids to 10mg " is ridiculous. When I told him I couldn't manage on that dose as I would hardly be able to move he just said to take what I needed to function. So we are back at the start when I was sent along in 2014 because I had been on a too high a dose too long. Now 3 years later I am on more than then.
20mg of Medrol left me cold - didn't do anything. On the other hand, 15mg of prednisone the next day was like the original miracle. Perhaps you need to try a different form of corticosteroid? Nothing to lose is there?
Do we have other types in the Uk ?
Prednisolone, as plain or enteric coated tablets, is the usual form. However, it is also possible to get prednisone and methylprednisolone in the UK as both tablets and as intramuscular depot injections. All are suitable for PMR. (The injections are mentioned in the most recent guidelines for the management of PMR.
It is also possible to use hydrocortisone although it means at least 2x daily dosing, possibly 3x daily.
It may not make a difference - but it did for me.
That sounds perfect. A friend of mine who is an orthopaedic surgeon seems to know absolutely nothing about steroids and believes all the rubbish anecdotes that they tell us. In fact he also does not know the difference between polymyalgia and fibromyalgia!
I hope mine is right and it is ok to do the operation if I am still that high. He is the same man who did a biopsy of my hip when I was on 15mg.
I am sure he will be fine. As long as he is big and strong!! Hip replacement is supposed to be the most succesful operation on the planet today.
I am on 10mg pred
Started at 12.5 and doing mostly ok.
I am having surgery for a fractured hip nondisplaced on Monday.
I am glad it is not a replacement but am still nervous.
I am 82 and hope I can come back to kind of normal.
Really good news- hope all goes well for you. X