I was diagnosed in Jan after symptoms started in Sept 2022.Started on 20 mg prednisone and labs went down and no pain . March I was tapered to 15mg and labs in April labs were higher than at the start , but no increased pain etc. ( ESR 44 , CRP 19.7 .
Rheumatologist said to stay on 15 until I see him this week and see what labs are prior to visit.
in the meantime my vision was blurry and had some tingling on top of head . Opthamology exam was negative and Doc just twinged my prescription which was over due . He’s been a very competent Othamologist ,but when I mentioned a high steroid treatment if I did get GCA he remarked that once it “ happens” steroids don’t help. I wasn’t in the mood to argue with him . He said it would happen overnight and nothing to prevent it.
Since that visit I picked up my new lenses and vision is still blurry . Last few days shoulder & neck pain but I can tolerate the pain . In addition fasting B/S was 140 this am . That is a first for me . I started Keto three days ago .
I’m feeling labs will not have improved and he may tell me to up my dose. Right now though the blurry vision and BS a is my concern until I see him Friday .
any suggestions ?
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GMA74
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He is wrong, high dose Steroids are the only thing we have to save our eyesight and the speedy administration of high dose steroids would be the first act of a competent hospital.
I think you need a better doctor who understands our conditions. I don’t care what a competent Opthamologist he believes himself to be.
I sincerely hope your Rheumatologist is better and has a sense of urgency about your condition. If you can’t get him/her and your eyesight is deteriorating and is maybe joined by jaw claudication and unusual headaches,I would go to ER and explain that you believe this is GCA. Time is of the essence!
I agree with SheffieldJane. In my opinion your doctor (ophthalmologist?) is blasé regarding the possibility of GCA. Can you tell us what the eye exam consisted of, please?
Temporal artery biopsy is one way of diagnosing GCA and Ultrasound imaging carried out by a proficient practitioner is non-invasive and conclusive but would be expensive for you if not covered in your health plan.
If you are worried and if your symptoms persist or worsen you do have to be your own advocate.
He is wrong. You can have GCA without it affecting sight and in that case the high dose pred is to prevent it progressing. If you lose sight in one eye, immediate high dose pred MAY bring it back if given after a very short time though there are no guarantees. Immediate high dose pred after loss of sight in one eye gives a 50/50 chance of preserving remaining sight, without treatment it is very likely that sight will go in the other eye within a couple of weeks. There is a chance at any stage and it is why we bang on about immediate medical advice and lots of pred with ANY visual symptoms or even jaw claudication.
Was that a medical doctor opthalmologist? He needs to get up to speed on GCA. It is strange because usually eye specialists are much more on the ball with high dose pred because they are aware of the devastation loss of sight means.
if I did get GCA he remarked that once it “ happens” steroids don’t help.
What he probably meant is once you have lost sight in eye[s], steroids won't magically restore it... but if only lost in one eye -it hopefully will prevent loss in second. but if you are on a higher enough dose prior to that happening they most certainly will help. What a very unhelpful and unprofessional remark to make.
Blurry vision is a common side effect of Pred unfortunately, but as you probably know tingly head can be a symptom of GCA so please discuss with rheumy.
I have had blurry and even double vision ever since I started with 60 mg PRED in AUG 22. I keep waiting for my vision to improve as I taper, but even though I'm presently at 12.5 mg, no improvement. FYI. Best wishes to you.
Ophthalmology did glaucoma and regular vision test and craned eye . Tingling only happened once 3 weeks ago . Are you saying the neck and shoulder discomfort could be more related to GCA than PMR ? Blood sugar 118 this am and vision is clearer in the am . What a ride this condition is ! Thankful for this forum
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Vision symptoms Prior to Vision Loss?
I don't have a definitive diagnosis but have ongoing problems with headache, blurry vision, jaw/facial pain, myalgia, arthralgia etc.
Surgery and prednisone 
Vision constantly changing
Blurry eyes - caused by Pred? And resolving after Pred stops?
