I spoke to my GP about 4 weeks ago because I thought I was having a GCA flare up and he increased my preds to 10mg from 5mg. I was feeling really well and thought I was doing well considering all that had happened during the last few months. I went for blood tests and the inflammation levels were the best (lowest) they have ever been , so he made me an appointment to see the rheumy as we were both baffled by the results and the symptoms I was having.
I saw the rheumy last Friday, not my usual one but the consultant rheumy!! He said he had come in specially to see me, as he didn't have a clinic that day so I suppose I should have been very grateful but I came away feeling utterly bewildered and gobsmacked after he informed me that I no longer had GCA but fibromyalgia!!
He did ultra scans on both temples and jaws ,made me squeal when he squeezed my knees, elbows and ankles very hard. Told me very abruptly that I MUST come off the prednisolone and decrease by 1mg every 2 weeks. I am currently taking 9.5mg instead of 10mg.
When I tried asking about the fibromyalgia he gave me a booklet, said READ THAT !and the other rheumy will see you in August!!
I had a report from him 2 days ago. It said I am being booked in for a DXA scan because I'm still taking preds and hadn't seen anyone at the hospital since June 2020 and should have stopped taking them by now. Not my fault (covid)
He doesn't want to see me again but I must see the other one in August
Feeling a bit disconcerted but carrying on as usual.
Hope everyone is as well as can be.
Sorry for the rant n rave xx
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piggypink
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I am speechless. It sounds like he just follows his own agenda. What do you think you’ve got? Inflammation levels are low when we are on Pred. that’s what it does.
Was the ultrasound scan done by a GCA/Vasculitis specialist?
You can have GCA that is not in the temples - extra cranial GCA. I have this and it only appeared in one armpit, ( halo effect around the arterial cells).
What were your original symptoms and how were you diagnosed?
Sorry for the questions but I feel concerned for you.
Do you think Fibromyalgia fits your symptoms?
A second opinion would be a good idea asap we can’t mess about with potential GCA.
I don't have GCA, but I would not have thought the symptoms of GCA were very similar to fibromyalgia. Did steroids work for you? They do not work for fibromyalgia. Of course you could have both.
I'd be gobsmacked too. I know there is sometimes a difficulty distinguishing PMR symptoms from fibro, but never heard the same of GCA (and apparently neither has Dr Google ). And you say the extra 5 mg pred helped you feel really well. Were the symptoms which puzzled you and your doctor resolved by the increase in pred and he still referred you to the rheumatologist to make sure nothing else has been brewing?
I have fibromyalgia and polymyalgia. But I had fibro for 12 years before I started poly! This makes it easy as I can distinguish between the two. When I saw a rheumy last year it was due to worsening osteo arthritis & inflammatory arthritis…she wasn’t interested in my polymyalgia, as that was under control & the GP & I handle the tapering & he helps so well. But she prodded & poked me all over & said I definitely have fibromyalgia, too (well, it had already been diagnosed by GP & two consultants…we moved house & was re diagnosed!) She gave me the new fibromyalgia booklet (but also referred me to two people in connection with arthritis in hands & feet). Steroids do not help the places where the fibro pain is. There is not much you can do for fibro, & the booklet does say it all, really. There are forums, though, & a charity & newsletters etc. There are two drugs widely used to help, but I can’t take either due to the side effects & didn’t try them for a few years until I had a bad flare up, when I went to the gp & he prescribed for me. It’s usually handled at GP level, I believe (have other friends with it). You don’t say what symptoms you are having, so can’t comment on the ‘fit’ to the diagnosis…but there are a total of 18 points on the body that can hurt, if pressed & prodded, & if you feel pain at a certain number, the diagnosis is usually then confirmed! I had 11 points when first diagnosed, but this consultant wrote to my GP & said ‘she has a full house of cards when it comes to fibromyalgia’! Some symptoms are shared…fatigue & brain fog, for example. Pain, too, but no miracle occurs if you take pred!! I hope this helps a little. I would prefer to have fibro than poly, if I had a choice!!!!! Take care! Sorry, I can’t comment on GCA, as I only know what I’ve read on this forum! S x
And I have to add to Pixi's excellent commentary that the trigger points in fibro can overlap with the trigger points in myofascial pain syndrome - which is often identifiable alongside PMR and which at least one top PMR research expert considers is likely to be the defining pathology of systemic PMR.
And I can assure you that there is a lot of overlap - I had at least 11 positive "fibro trigger points" before pred - which all improved dramatically with 15mg pred.
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). And you say the extra 5 mg pred helped you feel really well. Were the symptoms which puzzled you and your doctor resolved by the increase in pred and he still referred you to the rheumatologist to make sure nothing else has been brewing? 
Jaw pain could this be GCA
Could GCA be the cause? shortness of breath/fatigue~
Could this be GCA even though bloods are normal?
Could I have developed fibromyalgia as well as PMR?
Could i have GCA?
