well went for follow up after temporal artery biopsy was negative. I've been on 80 prednisone for 2 weeks ( some metropolitan packs before that). Had trip to ER per her recommendation after temporary blind spot peripheral vision 2 times....sooooo...doc doesn't think its GCA tho she admits biopsy size---1.4 cm ideal: small sample but still she thinks it ruled it out. My inflammatory markers not high. ESR 44 now down.....she's concerned it might have been another TIA ( mini stroke) had 2 inAugust. But am being treated with Plavix for that and all my tests good. She's thinking of sending me for another brain MRI but holding off. Had visual field today but poor reliability for ut. Logic nerve ok. She considered Lyme disease but seasonally ticks dormant or post covid inflammatory response. Is tapering prednisone and if symptoms come back will send me to rheumonologist. After week on 60 ( starts tomorrow) another ESR blood. Her tapering is 60 for 14 days, 40 for 14 days...30 and 20 at 14 days and then slow taper and watching for symptom return.
Sorry to be so long winded. Don't know what to make of it. They don't know...I don't know. Have people gone through this conundrum? I don't know what to think. Disconcerting doctors don't know. She doesn't think my eyes are in jeopardy... That's my main concern. What do I do now? Any suggestions? Thanks for all your support, caring and sharing. Its the only place I can go with this where you'd understand so thanks. Again apologize for it being so long!! All of you take care.
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Good morning C2s, sorry not an expert here but just to offer my sympathy with your frustration and worry about not knowing. Eyes are so important to us. I'm sure others with a lot more experience than me will be along with advice and support. Peter
Well I guess as nobody seems to know what’s going on, and whilst I don’t necessarily agree with her conclusion about it not being GCA, you don’t really have any option other than follow her tapering plan…and see what happens.
But as she doesn’t know what it is, I think she should have referred you to a Rheumy anyway without waiting to see if symptoms return….and chance you can push for that?
Maybe I could try to push for it. She had commented rheumys are more reluctant to go with GCA. Are reheumys the ultimate authority on this more so than neuro- opthamologists? I don't even no whose province this mostly falls under! Don't you think her taper is too fast, or ok? Thank you for your help. I sure am curious how I'll make out on taper
If you have GCA - yes may be too fast, but it’s not you don’t want to be at high does unnecessarily. If symptoms reappear then you have your evidence-bit of catch22 situation I know, but that sometimes that happens…
In most of the world GCA comes under the rheumatic diseases heading - historical perhaps because it started with PMR and then GCA was associated with it. But it is rheumies who deal with it and do the majority of the research.
Grrrr - the biopsy does NOT rule GCA OUT. If positive, it definitely rules it IN but a negative result just means they didn't find what they were looking for - and then it goes on the clinical picture and response to pred. It's like seeing mouse droppings but whatever you do with the trap - no mouse appears. Doesn't mean there isn't one though,
Hmm, I’d want to ask questions about justifying the non-diagnosis when the risk is to your eyesight and stroke etc. so, the sample as they say was smaller than recommended and you’ve been on 80mg Pred for 2 weeks, further increasing the likelihood of a false negative. Guidelines caution about these factors and interpreting results. Your ESR is down because you’ve been on whacking doses. So what is it exactly about all this that makes them more readily consider a recent infection with Lyme disease when the vector is on its winter holidays, than GCA?Apart from the eye issue and crazy Pred effects, do you feel improved on Pred?
You are not the first to have to go through the rapid reduction test of fire but perhaps that is what is needed in the circumstances. A second opinion of some sort is a good thing and hopefully gives you a chance to press them for their thinking in detail.
Hi. Yes, I'm definitely improved on pred. I had biopsy before I was put on 80 , about 5 days in on 60. That was after a much lower dose 6 day medrol pack. Today I go to my regular eye doctor because I need my pressure taken ( they didn't do it yesterday) as pred raises pressure and I've had issues with high pressure in past. Shell have neurologists notes and test results so that will also be a second pair of eyes on this. Such a journey it is with all of this, right? Thank goodness for all of you!!
Hi. No mayo clinic but I'm right in nyc, manhattan. I go to NYU langone medical center and its highly thought of. They'd refer me to rheumy there. Is rheumy the one who would have most expert and final word on this as opposed to other kind of drs? ( sorry, I'm pretty ignorant of this). Thank you for your response.
Depends on the Rheumy. Some seem more up to date with GCA than others. It’s always worth asking them out of interest and wonderment how many cases they’ve seen to back up the particular point they are making.
In the UK, with GCA the go to person is a Consultant Rheumatologist. I asked about the Mayo because on of CR's (now retired) was a world leader in research into PMR GCA.
Methinks I would want to see a Rheumatologist for a second opinion.
Interesting question about which specialty one should consult re GCA. I suspect a rheumatologist should be knowledgable if only because they are the ones who treat PMR, GCA's little sister. I just looked up which specialists treat vasculitis, and the list is long, beginning with theumatologists, but also including ophthalmologists. My ophthalmologist was much better informed than my GP (who hardly seemed to know about GCA) but I've never seen a rheumatologist, only have PMR. My ophthalmologist talked about how GCA was as serious as a stroke, and, generally speaking, told me in a regular visit to him after my PMR diagnosis everything I would need to know about GCA. Take your pick, I guess, and hope that the individual you see knows what they are talking about! Good luck!
An ophthalmologist diagnosed me and started me on my Pred journey and I attended eye clinic for a few months (obvious reasons as you know) did say I dive referred to Rheumy. Didn’t see him for another 7 months and then he wasn’t very interested!
Well some one did say once -They gave PMR to Rheumatology because they didn’t know where else to put it! GCA you would think would fall under Vasculitis but I think the link with PMR maybe muddled the waters!
I've never felt that PMR affects joints - at least not in the way that OA does. An early observation of mine was the areas pain seemed to align more with lymph system. Have always wondered why it was given to rheumatology, but in those days was link with vasculitis not known?
Not in 1888 no! And it wasn't polymyalgia rheumatica until the late 1950s when Barber coined the name. Originally it was called senile rheumatic gout but in the meantime had gained a range of very strange monikers:
You are correct in that assumption, because PMR causes aches and pains, just like RA.
Think in the old days, your granny sat by the fire and could hardly move for the pain - then some went blind. PMR then GCA.
Bhaskhar gave an interesting talk and he had a painting of a 15 or 16thc and the Cardinal in that painting, as Bhaskar pointed it out, that he looked as though he had classic PMR He gave a fascinating talk on how he wanted to set up a charity and his dream had come true.
PMRpro met me in a ♿️ the day of the Launch (10 May 2008) of the DVD 'You Are NOT Alone in the Centre of Life Newcastle upon Tyne.
Freya another bit of history to bore you with.............. Hel xx
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