All was going pretty well, managed to taper from 80 mg to 6 mg after almost 2 years (in april) after initial blurred vision/AF. Have not had any serious side affects or major relapses, one incident with raised CRP/ESR while tapering at 40 but markers settled. Then out of the blue today had an incident as before with blurry vision in the same eye as before, lasted 3-5 min. No other signs as head ache, jaw problems, only some stiffness in hips, neck an back which seems like PMR. Took 80 mg pred and will go to the ER tomorrow to get some blood tests and hopefully Ultrasound. Anyone else having had the same experience? Does not feel great to start another pred-journey, but the alternative is a lot worse of course ; )
And has anyone lost sight during tapering, one eye or both
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Gilmor
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Thank you for the reply, this forum is really great. Yes, hopefully will be able to taper more quickly this time although at a higher maintenance dose. And also being humble, and prepared for the risk of losing one eye, but as you said in another post you can manage that as well, and there are far worse conditions
I reduced slowly to 5.5 and had 2 episodes one day when I had shard like vision in one eye which lasted about 5 minutes each time and went up to 10 mg. My family doctor said I was perhaps having occular migraines and I said I was frightened and have now reduced over 3 weeks to 7 mg. Did I do the right thing?
Probably what a lot would have done, and if you’ve had no further occurrences then your doctor may be correct, but if I were you I would get eyes checked by Ophthamologist or optometrist just to really put your mind at rest that it’s nothing more serious than an ocular migraine- frightening though that is.
here’s a recent post about OMs - and you may find more if you search -
I, too, started out with 80 mg after I was losing vision in the left eye. Over the course of 2 1/2 yrs. the left eye periodically has problems. I have been checked and rechecked by my ophthalmologist and neuro-ophthalmologist and no one has an explanation. Only the best to you. Thank you for sharing your situation.
Thanks, yes this disease seems to be anything but straight forward ; ) My recent experience with the dim vision was the same as before, but this time without any ”warning signals” (head ache, scalp tenderness, jaw etc). Difference being I was on 6 mg now, so maybe that was enough to take care of the symtoms but not the vasculitis…?
Yes, just thought it strange to have the exact same eye disorder, in the same eye, without any of the prior symtoms. Why would it only affect the one eye anyway, the same vein? And is that why you rarely loose sight in both eyes, or is it usually that prompt medication saves the other?
Prompt medication - if you lose sight in one eye, the chances of the sight going in the other eye within the next couple of weeks are, at best, 50/50 even with immediate treatment! Always something to get checked out but in the UK at present the best place to go is not A&E but the local emergency optical services:
They have the equipment and expertise to examine your eyes and will refer you appropriately.
It is the effect on the optic nerve that is the concern, if the blood supply in the artery is compromised then the nerve doesn't get the oxygen it needs and just as with a more conventional stroke, cells die. If too many die, the nerve doesn't recover.
I had a similar experience recently which I posted about. If you're in the UK I would advise going to an emergency ophthalmologist not A&E like I did. They are overwhelmed and not equipped to cope. Luckily my eyesight returned to normal anyway. I had a blood test, all records of which were lost, and an urgent referral to my rheumy but was told not to increase my pred. The appointment came through for 6 weeks time. My optician referred me to my GP but I had to wait 3 weeks for an appointment then he was off sick so I still haven't been.My optician was very thorough and said all looked normal.
Yes, mine is normal too now, just a 3 minute fog/blur, but the first time me reumy was concerned and put me on 80 mg since the eyes were involved and and symtoms and markers pointed to GCA. So this time might be the same, except for the lack of symtoms
Sounds like they're being very cautious with you. My blurriness (double vision, almost) lasted most of the day. It was very scary. The optician said it could have been due to inflammation around my optic nerve which then cleared. It hasn't occurred again since and I've gone down to 6mg pred from alternate days of 7 and 6 since then.
Yes, I might have a higher dose than necessary, but rather that than the alternative. Will probably the emergency optician tomorrow and try and get some feedback from my reumy monday
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