I had a totally confusing visit with my rheumatologist on Monday. After almost 4 years he now says he is not sure if I have PMR. I reminded him that he said that three years ago and then withdrew his suspicion and decided it was PMR with a bit of Fybromyalgia thrown in.
I have had a flare recently and had not been able to get below 15mg daily for some weeks until 2 weeks ago when I went down to 14.5. Two days later I could not lift my arm to brush my teeth in the morning. The pain eased off later in the morning (I take the steroids with breakfast at around 8.30am) but that night it was so bad I took 5mg at bedtime. Huge improvement in the morning. He virtually accused me of using the steroids as a crutch and indicated that it could be all in my mind and that I do not have PMR. He is sending me for a guided ultrasound with injections in both shoulders. I think the problem is that my ESR is normal in the monthly tests that I have to take as I am on Azathiaprine - which I am not sure is making any difference - having tried Mathotrexate which increased the pain. Did I read somewhere that the ESR reading can vary depending on how long it is before the blood gets to the lab?
He also put me on Amalytriptiline ? last year - I took one, couldn't wake up and became very depressed that day which I have never been in my life. Remember I have two busted unhealing femurs and as the main PMR is in my shoulders and upper arms it makes getting around on crutches very difficult. He also wanted me to take Gabapentin a couple of months ago but after discussion with my GP we decided against it as I am already on 400mg of Tramadol and Paracetamol and we both felt I would be away with the fairies if I took anything extra. He has now given me a prescription for Nortripytine which he says is like the Amat.... but a weaker dose. Once again I will discuss with my GP before taking it. I need to be able to drive as public transport is out of the question with these legs and I do not live in a town.
My bone scan in January was brilliant as have the last two been. He has always been anxious to reduce the steroids as fast as possible and I know that long term they can do damage but I can't seem to get through to him that at the moment I am really not concerned with what might happen next year, in five years or ten years time......I need to survive tomorrow and the next day and next week.
Not sure what to do now.......I am sure it isn't all in my mind....as I said to him does he think that I want to go on taking the steroids and looking like a bull frog and carrying around an extra 4 stone?
Any suggestions gratefully received. Many thanks for all the help and support here.
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Ida-June128
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Where are you Ida-June? I'd suggest you need a new rheumy - this one sounds to have lost interest.
Your ESR can be meaningless - in some people it never rises (mine didn't/doesn't), in others it may be raised at the outset, fall with pred and never rise again, particularly if you are on other medication, and the lucky ones it falls with the right dose of pred and rises during a flare. If it isn't done within 4 hours of the blood sample being taken then it isn't reliable - actually, I'd say it wasn't reliable anyway. Have they ever looked at ferritin? They do that here as a measure of inflammation too. Mine is positive for inflammation whereas neither ESR nor CRP show anything
I have to say - I am so glad I have none of these arguments here. My GP trained in rehab, which is basically rheumatology, and I saw the head of medicine here a few weeks ago who has a special interest in PMR/GCA - no suggestion it might be "all in my head" and it definitely isn't other forms of arthritis, he checked that too, nor any "you've had it too long so it can't be...".
As you say - do they really think that we willingly take pred? And what on earth is wrong with using it as "a crutch" when it is the only thing that leaves us pain-free? There are plenty of people popping opioids and antidepressants that leave them addicted and disorientated.
And having read this - is it any better than pred?
Ida-June, not just confusing but quite an unhelpful appointment by the sound of it - I'm not surprised you don't know what to do now. However, help is at hand in that there is a wonderful rheumatologist at St Peter's Hospital, Chertsey - well worth a visit for a second opinion from my experience and that of several others who post on this forum. As you are a member of the Surrey group, I know this is not too far away from you and, if you feel up to the journey, then I'm sure you won't come away in such a quandary from an appointment with him. Let me know if you are interested and I will send you various contact details.
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