Hello, I'm the daughter of an 81 year old who's been diagnosed with 'atypical' PMR. (So I and she are new to the community).
She has also just been seen by the Rheumatolagist who says the temporal artery biopsy for GCA was negative, and blood tests CRP normal so she is does not have GCA.
She did (and has been having) visual 'disturbances' - bat like shapes or circles/lights in both eyes that she sees when eyes are closed, but also at times when eyes were open. The worse case scenario so far she looked at a white piece of paper that looked red in colour. The Eye Consultant and Hospital Eye Dr could not fid any problem with her eyes and the Rheumy suggest a migrainous type headache? Is this something that others have experienced?
By the way, I have found this site very helpful and have learnt a lot about PMR, but less about GCA other than headache (which she did have) and blindness.
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Oscar66
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About 1 in 5 patients with both PMR and GCA have "normal" blood markers and a negative TAB does NOT mean the patient does not have GCA - it means they did not find the cells they were looking for - something that happens in about half of patients. Unfortunately there are too many doctors who appear to not know this.
I can't comment on whether what she is seeing is typical of GCA I'm afraid - everyone seems to be different and I haven't had GCA affecting my vision but there are GCA patients on here who may comment.
I can only say - keep pushing. Are you in a position to go elsewhere? Privately if necessary? If so, whereabouts are you? Region will do.
Thanks for your reply. Actually she went privately in East Anglia UK for Rheumatology and the TAB, but both eye Dr at NHS hospital & Eye Consultant said nothing wrong with her eyes (or sight) it seems to be a hallucination??
I have GCA, but must admit didn't experience any of the symptoms you describe. However, as PMRpro says -every person seems to have slightly different symptoms.
As your mother is presently not complaining of any other 'head' problems - tender scalp, jaw ache, difficulty in eating/swallowing, then maybe the rheumatologist is correct and it's not GCA. You say she did have a headache, so what prompted that to go away?
FYI the only visual symptoms I showed (along with the head problems detailed above) was a blurriness starting in the bottom of one eye, and over a period of 4 days progressing up to cover the entire eye. Unfortunately by that time, sight was lost. However, I have to say I was not on Pred at the time, as was undiagnosed.
All I think you can do, is monitor the situation, and if any of the symptoms I describe occur then get your mother to A&E.
Interesting as she was also not on Pred when she first had these eye disturbances & headache. It was a visit to the rheumatologist that prompted a dose of the steroids and the TAB as it might be GCA. He ruled GCA out after fortnight, TAB clear and headache gone (albeit tender).
Ok, but as previously stated a clear TAB does not prove no GCA- just none was found in the tissue examined. Not quite the same thing. So as suggested keep monitoring things until you get a definitive diagnosis. Good luck to your mother.
I'm pretty new at this but ALL the material in Kate Gilbert's book says if GCA is suspected, its critical that the patient is put on steroids until it can be completely ruled out.
Except it is pretty well impossible to give a 100% "no it isn't" opinion and rule it out.
Having a positive TAB is 100% sure that it is GCA. Having a negative one means very little. Everyone's symptoms are slightly different, GCA can affect all sorts of places but miss the temporal artery (temporal arteritis is a real misnomer). And it isn't GCA in the temporal artery that is most likely to lead to blindness, it is another artery whose name escapes me at the moment.
It becomes an entirely clinical decision very often. Even the fancy imaging that will show it up in the rest of the body will not in the head as the brain has such a strong uptake of the contrast that it masks specific arteries.
Umm. Thanks, I'll try to keep a watchful eye and ask her about any symptoms, although she prefers to 'carry on' as normal if at possible. Pred has made her feel less pain and therefore enabling her to be active again. In fact on the higher dose was a bit 'manic' so I wonder if it will change on a reduced dose of 15mg daily. It's a worry to predict the next step or outcome.
Yes once her system gets accustomed to Pred the 'hyper' mode will go. It's a bit like children having a sugar rush! Well remember it - could talk for England, and slept very little.
Unfortunately, it's a powerful drug - so has its ups and downs.
Hi there, I have experienced what your mother has and was diagnosed with ocular migraines. They are quite scary, but seem to be harmless as far as I am aware. Wishing you all the best. Jenny 🌞
I also thought the description of her visual disturbance sounded like an occular migraine. It's something one can experience whether or not one also has PMR/GCA. If you are curious, you can Google "occular migraine" and look at the images that others have created to show what the visual disturbance was like for them. It was a Eureka moment for me.
Thank you all for your input, and Jenny maybe this is why the Rheumy and Eye Consultant are not so focused on GCA?
My Mum hasn't been a headache suffer since she was in her 40's so the migraine is also atypical for her. It was quite scary, but it was also the thing that recently prompted a private appointment with the Rheumatologist to do something about the increasing pain and stiffness at various parts of her body. Gout in foot 3 years ago, a frozen shoulder (back and bicep) over last 18 months, sciatica, flaring pain in both hands, finally hips and pelvic girdle. Especially bad in the morning - disturbed sleep too - until she 'got going' after a warm shower. Maybe all PMR signs?
As PMRPro says - sounds familiar. Treated for frozen shoulder for 18months prior to diagnosis. No hip or pelvic girdle problems though. We are all similar- but different! Which is what makes diagnosis hit and miss I guess.
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