Low esr and GCA
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Hi, I just wonder whether you can still have low esr results and have GCA? I am still awaiting a proper diagnosis. The orthpaedic surgeon I have been seeing has suggested to my gp that I may have PMR or RA. I have the symptoms of PMR and she allowed me preds for one week only. I felt wonderful! I was able to walk well, which I havent done for about two years now. I was getting out of bed and not having to hold onto things. I was getting sleep without being woken with severe hip pain! I went back and asked gpfor some more, excited cos they worked and I was thinking I could go back to work. She said no, not till I have seen the rheumy, as my esr levels were low. I have been told that they still can be low with PMR and the ortho spesh agreed and has written a report now to my gp suggesting I may have this, so I am hoping she will change her mind and represcribe before my rheumy appt next month. The reason I am worrying is that my jaw has been aching for the last week or so and I think I read that this is a symptom of GCA and I am scared of the implications of this without the right treatment.
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barb101 Xxxxxtttttttttt
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EileenH barb101
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Xxxxxtttttttttt barb101
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EileenH Xxxxxtttttttttt
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https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
A week of pred is taken by them to be pretty much diagnostic - the symptoms respond dramatically (as you did) to 15mg pred and then return in a similar time scale when you stop the pred. This group are a bit keen on the blood tests but otherwise it is excellent. Take the reference and try asking again - one GP in my practice was like that, when the rheumy was totally disinterested despite my fantastic response to pred a different GP in the practice was great and gave me pred. So maybe try a different doctor?
Is the jaw ache when you chew and does it go away when you stop? If so, yes it can be a symptom of GCA. However, the dose for PMR is still too low to protect you there. If it gets worse or you have other symptoms such as scalp pain, headache or any visual symptoms of any sort (blurred vision, double vision especially in the morning or any sort of loss of vision) go straight to A&E with the info from your orthopaedic consultant - preferably the same hospital if you can. Make sure a senior doctor deals with you - not on the word of a junior. Someone was dismissed with a VERY sarcastic comment recently which is appalling. If you have any other problems I would ring the orthopaedic consultant's secretary and explain your problems - it can achieve miracles sometimes!
Xxxxxtttttttttt EileenH
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EileenH Xxxxxtttttttttt
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I think a good approach might well be to return to the GP with the documentation you have and point out to her that either she allows you to have a moderate dose of pred in the meantime or you are likely to be out of a job. IMHO occy health are a mixed bag - either they are good or they are awful. It depends on what you do but I find it mind-boggling that she thinks that if you can't sit you can return to work after 5 minutes physio, it doesn't work like that - and if it is PMR physio is not advised. You need a bit more support from the orthopaedic consultant - a phone call to his secretary is definitely called for and tell her what is going on.
Good luck - I hope you get a bit of response from this rather feeble GP. She is talking rubbish insisting you have to see a rheumy for pred - the guidelines say that only patients with atypical PMR need to see a rheumy. Waiting months for an appointment is useless to someone who can barely move - and you have responded typically to pred.
Xxxxxtttttttttt EileenH
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EileenH Xxxxxtttttttttt
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I had a GP like that - no elevated bloods, no pred. But had I gone to one of the other members of the practice she would have treated me on symptoms and did give me pred on the basis of my response when the rheumy wasn't interested. Can you see another doctor in the practice?
The not being able to walk on getting out of the car is so typical - I looked about 90 when I got out of the driving seat for most of the 5 years I had without pred. You need another doc!!!!
Xxxxxtttttttttt EileenH
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EileenH Xxxxxtttttttttt
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Well, possibly but I have none of the above after 5 years on pred at above 10mg most of the time. I do have a heart problem, atrial fibrillation, but the cardiologist is confident that was due to the underlying autoimmune bit of PMR doing the damage - it was there mildly since not long after the PMR started and I wasn't on pred then. And leaving the long term inflammation of the arteries can CAUSE vascular problems, including heart attack and stroke, and make it more likely you could develop certain cancers.
But the bottom line is: it will give you your life back. Without being able to live normally I think saying she trying to avoid something that isn't certain anyway is a bit daft. If you are immobile then you are a high risk of osteoporosis anyway.
Xxxxxtttttttttt EileenH
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EileenH Xxxxxtttttttttt
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I hate saying this - but taking a partner often achieves a change of mindset on the part of a doctor who is dismissing a patient as "hysterical" or attention-seeking.
Thank goodness for the system here: you turn up and wait your turn (how old-fashioned) but you can also phone and make an appointmnet outside the normal 2 hours of surgery. And when you go in they deal with EVERYTHING in that session, no "you'll have to make another appoinment in 2 weeks..."
Xxxxxtttttttttt EileenH
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thanks again Eileen x