Have been in lots of pain in last few weeks, had steroid injection for quick relief, no help at all. Doctor wrote to hospital to my Rheumaologist....I have had fibro for the last 20 years, so with PMR as well, not been easy. ( Now I`m down to 10.5mg).. Didn`t hear from hospital for appointment, instead they sent "suggestions to my doctor, who has just rung me!
Firstly, and most importantly, the rheumie said, I must get off the steroids ASP.! without DMARDS...take painkillers, possibly tramadol (which I can`t tolerate or any actually because of fibro!) blood tests to look at inflammation....(2 months ago it was 10)
Feeling a bit scare about coming off steroids, so told my doctor it will be a VERY slow method!....
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Have tried Bowen therapy, but don`t feel well enough to resume at the moment....
I would welcome any suggestions, thank you.....
Meant to say, have had PMR for the last 4 years.....
I am so sorry you are having such trouble. Am I right in thinking you didn't actually see the rheumatologist at the hospital, the office just wrote back to your doctor? And this specialist is one you referred to as your rheumatologist, who presumably has known all along about your dual diagnosis? Why then the sudden panic about getting you off steroids asap? I don't know much about these things, and I know the experts will be along with their knowledge shortly, but I'd have thought at this point it would be a really good idea to try to find out why the steroid injecton didn't work, and what other factors might be in play here. Things get so muddied with multiple issues and the resulting cascade of medications. I do hope things get sorted for you soon. 💕
Saying a prayer for you .. I'm sure someone on this forum will be able to offer some advice .. as you are really caught between a rock and a hard place ..
Think you`ve asked me this before, (Norfolk) I go to N&N, I have the rheumie that says "be quiet, listen to me!" I think she didn`t like it when I last saw her (July last year) and balked at going on MTHX to get me off ASP! i know it`s difficult to define pain etc, but my doctor says rheumie has written to her to say...wait for it.....fibro is pain, stiffness is PMR! I was speechless.( I have both!)....I have asked my doctor to test me also for RA, my sister has it, and reading your posts about LORA, makes me wonder if it could even be that. My doctor, who I can speak to about any of these things says, I`m a complicated case! I have now booked blood tests, and will go to my doctors for results in couple of weeks, and will asked to be referred to another rheumie (any suggestions at N&N?) PM me Eileen if you have a name please....Thank you for your reply.....
I cannot believe it, pred is the only thing to alleviate the PMR pain. Tramadol is a total waste of time for PMR, although it may be OK for fibro. The steroid injection may not have worked because it was not given in quite the right place. An orthopaedic surgeon friend of mine reckons you can just be a couple of millimetres out and it is useless. When I was first diagnosed with PMR I had loads of blood tests including RA, which seems sensible.
I think my rheumie has come to the conclusion that it must be fibro, because the steroid injection didn`t really help me....so told my doctor to offer me painkillers! Like the above posts says, I am caught between a rock and a hard place! Makes me feel quite low, because I feel I`m not going to be listened to or treated properly...Thanks for your reply...
My doctor wrote to the rheumatologist, and after 4 weeks of not getting an appointment, I rang hospital last week, they said no appointment, the rheumie has written suggestions to your doctor!.....even my doctor wasn`t impressed with the "suggestions!" Thanks....
What arrogance! Fancy advising 'treatment' without having seen you....simply not good enough.
Does pred actually reduce your pain? At what dose did the pain get worse? Is 10.5mg enough for you at the moment? If you've had PMR for 4 years you know how this all works - and so does your GP obviously. Getting off pred is not the goal - getting to the lowest dose possible is!
Yes, arrogance is an understatement...I could never come to an agreement on treatment with her, it was always on her terms....my sister had her at first with RA, but has now changed to someone else, like me, she got quite stressed just at thought of the appointment!
I am stiff in mornings, but it eases a bit by lunchtime...very tired, I then take second dose with evening meal....I don`t leave the house much, and rarely drive....don`t think 10.5mg is enough, but what can I now do! Whenever I drop, I get awful flares....
It seems to me, there are some rheumies that are hell bent on getting us off a drug they put us on in the first place....regardless! Maybe they know something we don`t...
How are you now that you have stopped MTHX, ok I hope?
Can I ask you, or anyone who can answer, this may be a silly question.....Is there any advantage to having ESR, blood tests etc done, before taking the sterioids (in morning)....does it give a truer reading of the inflammation?....Having mine done tomorrow, just wanted to know....
To be honest - don't know. I don't know how quickly the pred works on the ESR but it won't do much inside 2 hours anyway and I think it is probably longer than that before it would reduce the ESR significantly at all. But it is the state you are in AFTER taking the pred that matters - most people are stiff in the mornings after the cytokines are shed in the body at about 4-4.30am.
Ooops - sorry, missed the other post! Sorry - there are so many people on the forums I can't remember details of where you are. I do wish there was some way of indicating it - I suppose we could always add it to our profile pages (that very few people complete  
Fibro is pain, PMR is stiffness eh? Glad she thinks so! I know plenty of people with PMR and pain but who respond to pred - which fibro doesn't! I don't know doctors at the N&N but I have asked a former PMR patient who was under there - of course her doctor may have left by now...
ESR is a snapshot in time, it does not jump up and down significantly during the day. You need to look at the changes over days or weeks to see if the inflammation is improving or not. Are you having your CRP checked to?
I asked the one person I know who would have used the N&N - unfortunately she went to the other hospital and was so disgusted at the physical state of the place she left and went back to her GP to tell him. He then managed her for the entire time of both her episodes of PMR. Sorry...
Don`t apologise....thanks for trying anyway....I will look up on the different rheumies, and my sister has changed from mine to another. (for RA) She sees him in a couple of weeks, so maybe I`ll change to him, if shes happy after her appointment...although she was told by her GP, you can`t pick who you want to see, only someone who can take on more patients....