Hi gang, newbie here! Not me with the PMR_GCA but other half who is 66 next week. He's had PMR for about three months, diagnosed last week when he popped the pred and hey presto he was free! Anyway, we never thought of GCA until GP prescribed a dose of 50mg rather than the 15mg we were expecting. Realised that the headaches and temple pressure plus jaw pain obviously suggested GCA, so now on red alert, as sight loss is a pretty horrific prospect. Now his temples are still feeling pressured and still has PMR symptoms, but is 90% better then pre-pred. The question is, should we be worried about sight loss? What experiences did people have who have either lost their sight or experienced vision problems with GCA? Is it very sudden? Can you wake up one day blind? I apologise if this brings back painful memories And thank you for sharing your stories, you are all inspirational
What are the specific eye symptoms that precede s... - PMRGCAuk
Like most symptoms in GCA it seems, eye problems can come in various guises.
Some people do unfortunately lose sight “overnight” , some have intermittent loss of sight or other visual disturbances for a few seconds or minutes as a warning, others (like me) have blurring initially leading to complete sight loss in one eye over a period of days (4 to be precise).
However, I must emphasis I had symptoms for about 18 months culminating in the excruciating headaches, jaw aches etc over last 6 weeks - but had not been diagnosed and therefore not treated!
It’s usually untreated patients that lose sight, not always, but usually.
Your husband should be okay, but 50mg is a sort of a medium dose, personally I would be happier if he was at 60mg. If his symptoms don’t subside, then you need to speak to doctor re increasing dose.
Please keep us informed.
It sounds like your husband is in good hands and his sight should be OK as you are both now aware of GCA and what it is like. It is those who have doctors who don’t know or recognise the symptoms and are not given pred who have problems.
They’ve caught it and your other half is safe. He should mention that he still has temple symptoms and also have his eyes checked out at the hospital.
I only have PMR, so have always been on lower doses. It is always a small worry at the back of my mind. As I understand it, sight loss can occur without visual symptoms in some people. So it’s very good that you have the diagnosis and treatment.
It's important to test his blood inflammatory factors: CRP & ESR to see if the prednisone is bringing them back to normal. [CRP<9; ESR<20]. Also to have a temporal artery biopsy before he has been on prednisone too long. This is the gold standard for GCA diagnosis
tho sometimes fails to diagnose.
In my case i suffered partial vision loss of one eye while dozing in a car. Was diagnosed with probable GCA due to symptoms [headaches, jaw pain, weight loss] and blood test of CRP=87 where normal <9. I was put on 80mg prednisone but after 2 weeks my CRP only dropped to 37. A few days later suffered a stroke caused by the GCA. In the hospital was given 1,000mg/d for 3 days prednisone which finally brought the CRP to normal. My biopsy positive for GCA.
My sister also has GCA and saw colored visions before total loss of sight in one eye overnite. She also had the 1000mg x 3 infusion but too late to save that eye. She also has aoritis caused by GCA, after 7 yr. Finally low dose aspirin may be advised to minimize chance of ischemic stroke.
Unfortunately a TAB is not the gold standard for GCA diagnosis; no matter what some doctors may still think.
As we know, if it is a positive diagnosis then you DO have GCA, however in many cases it produces a negative diagnosis -which is in incorrect (either done too late after Pred taken or no cells in actual sample taken). That can lead to mis-diagnosis and delay in correct treatment.
Symptoms are always the major factor.
"This is the gold standard for GCA diagnosis..."
I found this yesterday - in this paper with new recommendations for the use of imaging in GCA:
I have read it before but hadn't noticed this bit:
" The task force members recognised that many physicians still consider TAB as the gold standard test for the diagnosis of GCA. The present (and subsequent) proposition(s) should not be understood as a recommendation against performing TAB. In settings where imaging modalities are not readily available or expertise with imaging in GCA is questionable, a biopsy should still be favoured in first place. Besides, if positive histology is already available, additional imaging may not be needed for the diagnosis. In centres, however, where imaging (and TAB) is readily available and performed with high quality, the task force recommends that imaging should be preferred as the first test because of low invasiveness, ready availability of imaging results and assessment of a larger extent of potentially inflamed arteries at the same examination, thus contributing to a lower number of false negative results."
There is better available these days - TAB should be at the end of the list of options. Although it might sound a case of money, over and above that is the fact that it ISN'T entirely reliable but too many doctors think it is infallible. It isn't.
Being on 50mg and having a 90% improvement in symptoms very probably means that the risk is now very very small. Although a higher dose would be used for a patient who had already had any visual symptoms at all, 40mg is the recommended starting dose for patients without and in fact many rheumatologists are of the opinion that even much lower doses will manage GCA that isn't affecting vision. The only reason for using such high doses is because there is evidence of risk to sight and the very high doses are used to reduce the inflammation as quickly as possible.
But if you are in the realm of PMR/GCA, ANYTHING affecting vision should be taken seriously, from blurry/double vision to transient loss of sight, even for a few seconds, or a feeling there is a veil covering all or part of the field of sight.
In my first year of PMR my GP had me reduce very fast, and I went from 20 mgs of prednisone to zero in 10 1/2 months. Towards the end of that reduction I had one occurrence of the “gray veil” come across my eye but I didn’t know how dangerous that was....and I took a nap and when I got up my eye was back to normal.
Then in late December of that year, after my PMR had a massive flare from being taken off the prednisone, I discovered the wonderful UK forums. (You and Mrs O? Helped me enormously). There I learned about the eyesight risks and what to watch for. I have always been worried that I should have gone to the hospital and that I should have had much higher doses as treatment for GCA.
Is there any reason that I should be worried now, almost 5 years later? Is GCA lurking in my body?
I’m almost down to 2 1/2 mg and have had PMR for almost exactly 6 years.
Theoretically yes. In practice - the risk is probably small. It goes into remission - that doesn't mean it is cured but it may mean you never meet it again. But it would be silly to ignore any signs.
Wow, such a lot of experience from you all, thank you!
I do feel assured now that his sight is safe, at least for now.
His CRP & ESR were both normal gifford7, so can't use them as a guide. I actually think he's gotten away lightly after reading all of your experiences and others on this forum. He's also responded really well to the pred in terms of his mood, he's more positive and bright than he's been in a long while. He says he feels as though he feels 'normal' again, after having had low mood with periodic depression for years.
About 3 years ago I started to wonder whether his hypoglycaemic 'episodes' (in the absence of diabetes), high metabolism, mood swings, then later rapid weight loss, were all in some way linked to the endocrine system not operating properly. I don't understand it all yet but I intend to find out.. I bet some of you do already! I'm hungry for knowledge so grateful for anything you'd like to share
Back to diagnosis: Am I right in that he won't now get a positive diagnosis of GCA since he'll have been on pred for three weeks by the time he sees the rheumy?
By positive diagnosis you mean TAB or ultrasound results? TAB is only positive in under half of cases anyway - the symptoms are most significant, supported by ESR/CRP if they are high. If they aren't - then it is just symptoms and response to pred. I think the u/s can show the left-overs for a few weeks, but yes, the sooner a rheumy sees the patient the better.
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